Exploring the Experiences of Nigerian Female Dementia Caregivers

Home , Odinani

MIAMI UNIVERSITY The Graduate School

Certificate for Approving the Dissertation

We hereby approve the Dissertation

Candidus C. Nwakasi

Candidate for the Degree

Doctor of Philosophy

______Dr. Kate de Medeiros, Director

______Dr. Katherine Abbott, Reader

______Dr. Sara McLaughlin, Reader

______Dr. Jennifer Kinney, Reader

______Dr. Amy Roberts, Graduate School Representative

ABSTRACT

EXPLORING THE EXPERIENCES OF NIGERIAN FEMALE DEMENTIA CAREGIVERS

Candidus C. Nwakasi

There is no formal word for dementia in Nigeria. Instead, people consider dementia an inevitable part of aging. Even so, people with dementia and their families are at risk of stigmatization. With its rapid aging, increased risk of dementia, and lack of formal long- term care, this study focused on the experiences of Nigerian women who are caring for a relative with dementia since women are at the center of informal long-term care in the country. The study employed a qualitative descriptive method. Semi-structured interviews were conducted with a purposive sample of 12 adult informal female caregivers in Anambra, Nigeria. Data were then analyzed for themes. Afterwards, focus groups involving 21 adult Nigerians residing in Ohio, US, were conducted to offer more insight on the findings. Three major themes were identified: making sense of dementia symptoms; perceived caregiving challenges and support; and “why we do it,” which relates to the major reasons these women provide care. Understanding the experiences and perceptions of Nigerian female informal dementia caregivers is important to improving caregiving quality and quality of life of the caregiver and the person with dementia. Increasing dementia awareness is also important to mitigate the potential threats of stigmatization associated with dementia in Nigeria. Findings point to a likely growing household burden that affects some older adults and their families, especially adult women, and draws attention to the need for strategies to help strengthen informal caregiving in Nigeria. The study also identifies the need for dementia education and formal long-term care policies in a rapidly aging Nigeria.

EXPLORING THE EXPERIENCES OF NIGERIAN FEMALE DEMENTIA CAREGIVERS

A DISSERTATION

Presented to the Faculty of

Miami University in partial

fulfillment of the requirements

for the degree of

Doctor of Philosophy

Department of Sociology and Gerontology

Candidus C. Nwakasi

The Graduate School Miami University Oxford, Ohio

2019

Dissertation Director: Dr. Kate de Medeiros

Candidus C. Nwakasi

2019

TABLE OF CONTENTS

Chapter 1: Introduction ...... 1 1.1 Introduction ...... 1 1.2 Background and Context...... 1 1.3 Research Questions ...... 3

Chapter 2: Literature Review ...... 4 2.1 Introduction ...... 4 2.2 Nigeria’s Health System ...... 4 2.3 Stigma of Dementia ...... 6 2.4 Caregiving in the Family ...... 7 2.5 Gaps in Caregiver Availability ...... 8 Transnational migration ...... 8 Effect of HIV/AIDS epidemic ...... 8 2.6 Stress of Informal Dementia Caregiving ...... 8 2.7 Help Seeking by Dementia Caregivers ...... 10

Chapter 3: Methodology...... 13 3.1 Introduction ...... 13 3.2 Methodology ...... 13 3.3 Sampling Strategy for the Interviews ...... 13 3.4 Data Collection ...... 14 3.5 Data Analysis ...... 16 3.6 Focus Group Discussions ...... 17 3.7 Trustworthiness of the Study ...... 19

Chapter 4: Study Findings ...... 20 4.1 Introduction ...... 20 4.2 Demographic Characteristics of Participants ...... 20 4.3 Themes ...... 22 4.3.1 Making Sense of Dementia Symptoms ...... 23

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4.3.2 Perceived Caregiving Challenges and Support ...... 31 4.3.3 “Why we do it” ...... 38 4.4 Summary ...... 43

Chapter 5: Discussion ...... 45 5.1 Introduction ...... 45 5.2 Cultural Views About Dementia vs. Dementia Awareness ...... 45 5.3 Support System for Informal Dementia Caregiving ...... 47 5.4 Motivation for Dementia Caregiving ...... 50 5.5 Framework Describing Sociocultural Factors Influencing Dementia Caregiving ...... 52 5.6 Experiences from the Research Field ...... 53 5.7 Limitations of the Study and Future Directions ...... 54 5.8 Policy Implications of the Study ...... 56 5.9 Conclusion ...... 57

References ...... 59

Appendices ...... 68 Appendix A: Terminologies ...... 68 Appendix B: Consent Form for the Caregivers who were Interviewed? ...... 69 Appendix C: Interview Guide for the Dementia Caregivers ...... 71 Appendix D: Consent Form for the Focus Group Participants ...... 73 Appendix E: Focus Group Discussion Interview Guide ...... 75 Appendix F: Demographic Information...... 77 Appendix G: Institutional Review Board Approval Letters ...... 78 Appendix H: Research Setting ...... 81

LIST OF TABLES Table 1. Demographic characteristics of participating caregivers Table 2. Profile of focus group participants Table 3. List of themes and sub-themes

LIST OF FIGURES Figure 1. Framework describing sociocultural factors influencing dementia caregiving

DEDICATION I dedicate this dissertation in loving memory of my grandfather, Chief John Nwakasi. More importantly, to my aunt, Mrs. Victoria Emeka, who was his caregiver until his death. Mama Enugu, you are the inspiration behind all the work that was put into getting this dissertation completed.

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ACKNOWLEDGEMENTS I am thankful to God for everything. I am also very grateful to Dr. Kate de Medeiros for all her support throughout my academic journey. Your unwavering support and kindness will always be remembered. You made me a better research scholar and I cannot thank you enough for how much I have grown learning from you. I also wish to thank my committee members, Drs. Katherine Abbott, Sara McLaughlin, Jennifer Kinney, and Amy Roberts for your support. Thank you so much for making this project better improved. To Dr. Janardan Subedi, you are always willing to support in every way possible including listening to me and providing guidance. For that, I say thank you. To all the faculty members and staff of the Department of Sociology and Gerontology, Scripps Gerontology Center, and Miami University, thank you for the various ways you have supported me. To my friends and family in Nigeria, US, and other parts of the world, thank you. To Ify, thank you, always.

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Chapter 1: Introduction 1.1 Introduction Increasing global prosperity and medical advancements are resulting in people living longer. Nigeria is also enjoying this increasing number of older people but with such developments comes an increased risk of chronic diseases. One of such diseases is Alzheimer’s disease (AD) — a progressive, irreversible brain disorder that affects the person’s memory and thinking skills, and affected persons may lose their ability to perform simple tasks as the condition progresses. Additionally, AD is a common cause of dementia in older adults. In Nigeria, older adults are exposed to disadvantages resulting from lack of social insurance, high poverty rate, weak health system, and lack of formal long-term care. With these issues, older adults in the country with functional impairment such as dementia are more vulnerable to poor quality of life without support from their families. This support from families may be in the form of informal caregiving. Because informal caregiving may be influenced by culture, this research project is designed to help illuminate some of the sociocultural issues associated with dementia symptoms and dementia caregiving in Nigeria. Hence, this study explored the experiences of female informal dementia caregivers in the country. Chapter 1 of this document offers an overview of the study. It provides a background and context to support the relevance and need to explore issues of dementia and informal caregiving in Nigeria. It also describes the research questions that directed the study design. In succession, Chapter 2 reviews relevant literature, Chapter 3 describes the methodology used in the study, Chapter 4 reports the findings, and Chapter 5 discusses the findings and the implications. 1.2 Background and Context Sub-Saharan Africa (SSA) is projected to have a fourfold increase in the population of older people (60+ years); from 2005 to 2050, its population will increase from 36.6 million to 141 million (United Nations, 2016). More so, Nigeria, with an estimated population of 186 million (Central Intelligence Agency, 2017), holds an important position as the country with the highest number of older adults in the region (Velkoff & Kowal, 2006; Zaney, 2018). In 2015, the population of Nigeria’s older adults (60+ years) was about 5.6 million, and it may increase to 18.8 million by 2050 (He, Goodkind & Kowal, 2016). As the number of Nigeria’s older adults increases as a result of population aging, there may be some related social, political, economic, and health implications. One such health implication is the increased risk of Alzheimer’s disease

and related dementias (ADRD – referred to as dementia in this study) and cardiovascular diseases (Ballard et al., 2011; Kalaria et al., 2008; Sosa-Ortiz, Acosta-Castillo, & Prince, 2012). However, because Nigeria’s high fertility rate masks the fact that there is an increasing older population, issues affecting older adults, such as dementia, are likely overlooked (Velkoff & Kowal, 2006). This may be part of the reason for the dearth of studies on dementia and dementia caregiving in Nigeria (Mavrodis et al., 2012; Olayinka & Mbuyi, 2014). In addition, Nigeria’s health system seems unprepared to address the issues of a growing population as it presently lacks long-term care policies (George-Carey et al., 2012; Martin Prince et al., 2013). Consequently, most of its older adults, including those with dementia, rely on informal long-term care (e.g., dementia caregiving) provided by female caregivers who are often family members. Even when there might be difficulties associated with caregiving, these women may carry on with their caregiving roles because they believe in caring for their parents when they become older (Okoye, 2014; Togonu-Bickersteth & Akinyemi, 2014). This study seeks to deepen the understanding of some of the sociocultural factors that may be involved in dementia caregiving. For example, how are dementia symptoms and caregiving perceived or conceptualized in Nigeria? A previous study using qualitative research was conducted to explore dementia perceptions of Nigerian migrants (mostly nurses) in the UK (Nwakasi, Hayes, Fulton, & Roberts, 2019). The study revealed the impact of poor dementia awareness on migrant caregivers but also highlighted the need to further explore the experiences of dementia caregivers in Nigeria. Findings from such exploration may help highlight the need to develop long-term care policies that are effective and responsive to dementia care. The current study argues that although there are many studies on dementia and caregiving in developed countries (see Fowler et al., 2012; Martin et al., 2015; Ngo & Holroyd-Leduc, 2015; Quinn, Clare, & Woods, 2010), recommendations from such studies may not be applicable in a typical Nigerian context. This is because the unique situations of persons with dementia and their caregivers in Nigeria need to be considered. Therefore, this study addresses some of these gaps while also informing future research in the country by exploring the experiences of female informal dementia caregivers in Nigeria.

1.3 Research Questions The aim of the proposed study is to gain a better understanding of how sociocultural factors influence dementia perceptions and dementia caregiving experiences in Anambra state, Nigeria. The research questions this study aims to address are: 1. What are the perceptions of dementia symptoms by Nigerian female informal dementia caregivers including how they define and conceptualize it? 2. What are these women’s experiences of providing caregiving for a person with dementia? a. Are there challenges and joys in caregiving? 3. What practices (e.g., access to support groups, family assistance) do these female caregivers perceive as affecting caring for someone with dementia? The insight gained from the study deepened the understanding of meanings attributed to dementia symptoms in Nigeria, attitudes that impact dementia caregiving, and issues related to support for dementia caregivers. Moreover, the findings shed light on an aspect of the country’s informal long-term care that is rarely studied: dementia caregivers. This study will help encourage research and policy deliberations on issues of aging, dementia, and long-term care in Nigeria.

Chapter 2: Literature Review 2.1 Introduction Although developed countries are experiencing major challenges from the incidence and prevalence of dementia, studies predict that developing countries are going to be more affected by the burden of Alzheimer’s disease and related dementias (ADRD – also referred to as dementia in the study), and other types of burden in the near future (Prince, 2000). However, studies related to dementia are fewer in developing regions compared to developed regions (Prince, 2000). This chapter uses some of the few, relevant studies available to describe Nigeria’s health system and its poor readiness to address dementia issues; problems of stigma associated with dementia in Nigeria; caregiving in the family; gaps in caregiving availability; stress of informal dementia caregiving; and help seeking by dementia caregivers. These issues are discussed in the following sections in the chapter. 2.2 Nigeria’s Health System The National Health Insurance Scheme was designed as a public-private partnership to help provide quality, affordable, and accessible healthcare to Nigerians (Crawford & Sachdev, 2018; Olugbenga, 2017) because of the government’s inability to finance its health system. However, poor implementation of this health policy resulted in high rates of non-participation, and less than 5% enrollment in the health insurance scheme (Crawford & Sachdev, 2018; Olugbenga, 2017). Thus, healthcare underfunding remains a persistent problem in the country and is the reason there is high private health expenditure and about 95% out-of-pocket expenses on healthcare (Crawford & Sachdev, 2018). Other problems of Nigeria’s health system include health inequity and poor access to healthcare, particularly for those in rural areas (Welcome, 2011). As indicated earlier, the country’s health system has been referred to as weak and unprepared for the issues associated with the rapid population aging that is currently happening (George-Carey et al., 2012; Ferreira & Adkins, 2011; Prince et al., 2013). Also, poor ADRD awareness, coupled with the country’s rapidly aging population, will likely be too much for Nigeria’s health system (Martin Prince et al., 2013). This subsection provides a critical view of the health system and how it might affect the older population and their families. It also creates a picture of the environment in which informal dementia caregiving is provided and supports the claim that the country is not well-equipped for aging population issues such as ADRD.

In developing countries like Nigeria, health issues are challenging because of the lack of adequate and responsive health programs (Muhammad, Abdulkareem, & Chowdhury, 2017). The resulting overwhelming number of poor health conditions of Nigeria’s population gives the indication that any health system that improves health is good enough for the country (World Health Organization, 2000). This assumption is far from the truth, because the high poverty rate in the country also implies that there is a high risk of increased financial burden on families from healthcare costs. Furthermore, the lack of social security and health insurance in the country reinforces the dependence of Nigerian older adults on their adult children — some of whom are undergoing economic hardships (Akinyemi, 2014; Okoye, 2014). Consequently, adult Nigerian children may face issues of determining how to divide their attention and resources between their immediate families, siblings, and their older parents, since all might require assistance. As Nigeria’s population rapidly ages, there may be an increased rate of health and economic burden in the country, thus reinforcing the need for a robust health system that can effectively and efficiently respond to the varying health and long-term care needs of its rapidly aging population. However, bad governance/poor oversight is another issue that prevents the health system from performing optimally. For example, decentralizing health and social services in Nigeria are limited by organizational inefficiency at the three tiers of government (federal, state, and local), and this results in waste of scarce resources (Aloghena et al., 2014; Kress et al., 2016; Welcome, 2011). Some of these wasted resources may be beneficial to social and health interventions that are vital to vulnerable, older Nigerians such as those with dementia who mostly reside in rural areas. Moreover, without adequate government funded interventions and a lack of health insurance, older Nigerians in rural areas must depend on their low-income families to pay out-of-pocket for their healthcare needs (Awosusi et al., 2015). This shows a somewhat grim picture of financial burden for most families of people with dementia in the country — especially if we consider that the estimated cost of dementia care in Sub Saharan Africa was about $6.2 billion in 2015 and two-thirds to three-quarters of the cost was from informal care (Alzheimer’s Disease International, 2017). In addition to health financing challenges in Nigeria, there are issues of a declining health infrastructure, poor organization and management of health workers, poor referral systems, a lack of drugs and medical equipment, and migration of specialized health workers (Abosede & Sholeye, 2014; African Strategies for Health, 2016; Kress et al., 2016; Welcome, 2011). With the

state of Nigeria’s health system, it is not surprising that functional formal-long term care policies are likely unavailable (Tanyi, André, & Mbah, 2018). However, this lack of formal long-term care policies may be a result of the collective view of Nigerians that caregiving for older adults should be within the family, or from the government’s negligence on the growing issues associated with Nigeria’s rapidly aging population (Togonu-Bickersteth & Akinyemi, 2014). It may also be that Nigerians have yet to accept the concept of formal long-term care (Okoye, 2012). These explanations are why informal long-term care is likely the only type of long-term care most older adults have access to in Nigeria. 2.3 Stigma of Dementia Nigerian languages do not have a name for dementia, and words like “sorcerer,” “mad,” and “unintelligent” that are used to describe dementia symptoms are derogatory and often lead to stigmatization of the person with dementia (Adebiyi et al., 2016; Ogunniyi et al., 2005). Because of dementia-related stigma, caregivers may not be inclined to provide adequate care for the person with dementia, as they themselves do not want to be associated with the stigma. For example, people in the community may avoid marrying into a family with dementia; this may directly affect their children and their children’s children, if they are old enough to marry (Adebiyi et al., 2016). Moreover, the stigmas that result from prejudice are culturally grounded, and they may persist regardless of increased education and transformation of the cultural features that generated the stigma in the first place (Pescosolido & Martin, 2015). For example, a study was conducted in Nigeria about enacted and implied stigma for dementia (Adebiyi, Fagbola, Olakehinde, & Ogunniyi, 2016). The authors found that among the sample of respondents (n=211), more than 36% agreed that they would prefer not to know if they have dementia, preferred not to let outsiders know of their condition, and would be ashamed to have dementia. About 30% agreed that people with dementia should not be taken seriously, while 17% agreed that persons with dementia should be restricted from interacting with people in the community. The results are also indicative of discrimination against people with dementia and the fear of becoming stigmatized due to dementia. Although the study results are not generalizable, this mixed method study provides a much-needed explorative lens on the issues of stigma and dementia in Nigeria.

2.4 Caregiving in the Family Caregiving for older Nigerians in need of care (e.g., those with dementia) is usually within the family because African families are structured in a way that the needs of older adults are supported by their adult children and relatives (Bigombe & Khadiagala, 1990; Togonu- Bickersteth & Akinyemi, 2014). Nevertheless, family caregiving for older Nigerians has been decreasing, and there are speculations that some Nigerians are choosing to have more children to ensure they are cared for when they are older (Akinyemi, 2014). However, increasing family size may not be a solution to the problem of long-term care support for older adults. This is because, regardless of the family size, the high rate of poverty and slow economic growth in the country are factors that make care for older adults within the family unit difficult (Togonu-Bickersteth & Akinyemi, 2014). In terms of assigning family responsibility, a typical Nigerian taxonomy of caregiving roles requires that the wife becomes the caregiver for her older in-laws or her own parents, if they cannot adequately take care of themselves, while the husband provides financial support. Men are likely to be reluctant caregivers for older adults in the absence of women in the family. Moreover, in situations where the men in the family are caregivers for their older parents, they tend to be less satisfied with doing so than the women, because they view such functions as abnormal, based on the cultural premise that caregiving is meant for women (Okoye, 2012; Uwakwe, 2006). For quality of long-term care to improve in Nigeria, there needs to be development of long-term care policies (Okoye, 2014). Currently, seeking formal caregiving services for older adults with issues of functional impairments like dementia is culturally frowned upon by some Nigerian families. This is because it is expected that adult children of the older adult will be responsible for their parents’ care until their death (Okoye, 2014). Although the responsibilities involved in dementia care are immense due to the complex needs of a person with dementia, family members who function as caregivers are limited in what they can do, yet they rarely seek professional help. As a result, care for people with dementia in Nigeria is considerably worse compared to developed countries such as the UK and US, as dementia, regardless of the severity, is managed at home by the family members without the assistance of formal services (Ogunniyi et al., 2005).

2.5 Gaps in Caregiver Availability Availability of informal caregiving is influenced by funding, quality of family relationships, community support services for older adults and their families, and improvement of caregivers’ skills and knowledge (HelpAge, 2011). Additionally, there might be context- specific issues that may limit the availability of caregivers for older Nigerians. This sub-section discusses some of these issues (i.e., transnational migration and effect of HIV/AIDS). Transnational migration While formal long-term care remains underdeveloped in Nigeria, countries like the United Kingdom and the United States with developed long-term care systems are in high need of health professionals (e.g. nurses) to meet the increasing healthcare demands of their aging population. As a result, there is a high rate of recruitment of experienced nurses from countries such as Nigeria (Brush, Sochalski, & Berger, 2004). Furthermore, there is increasing migration by women to developed countries to work as direct, long-term care workers (Browne & Braun, 2008). Because women are more likely to provide long-term care services, either formally or informally, the more Nigerian women migrate, the fewer the number of women who will be available to care for their relatives with dementia or other issues relating to aging and functional impairment in their home country. Effect of HIV/AIDS epidemic Another example of a situation that resulted in a gap in caregiving responsibility is the HIV/AIDS epidemics that plagued Nigeria. The deaths of millions of youths and middle-aged Nigerians from the disease disrupted the traditional family structures of many households (Kharsany & Karim, 2016). As a result, some older adults receive decreased family support, and in some cases, they become caregivers for their children, or for their orphaned grandchildren. Also, there is a higher HIV prevalence rate among younger adult women than men because of lack of proactive reproductive health programs in Nigeria (Kharsany & Karim, 2016). This higher HIV prevalence in women is also likely to affect the availability of informal caregivers for older adults with conditions such as dementia 2.6 Stress of Informal Dementia Caregiving Informal caregiving for older adults with dementia is difficult and demanding. Kaschowitz and Brandt’s (2017) informal care model helps provide a perspective on some of the factors that influence how care is provided for a person with dementia.

According to Kaschowitz and Brandt (2017), “The care decision depends on the care recipient's needs, attitudes and beliefs towards caregiving as well as on perceived difficulties. But also, the relationship between those involved, the family and social network as well as the community are important factors” (p. 73). This model shows that no matter the chronic illness that requires steady informal caregiving, providing care involves navigating a complex situation including choices, culture, and resources. For example, in typical Nigerian families where there is low income, older persons being cared for may think it is their right to be cared for at home and as such expect care from their adult children. The adult children may have similar thoughts and beliefs; they may provide care regardless of their lack of required resources and the difficulties this situation imposes on their families. Because of the emotional connectedness involved in informal caregiving for a family member with dementia, the caregiver may undergo stressful role adjustments and feelings of despair for the affected loved one. Caregivers in larger households are less likely to experience as much burden as those in smaller households because of available support from other family members. One in three caregivers are said to have depression, and those who care for people with dementia are more likely to have depression than those who do not provide care (Kaschowitz & Brandt, 2017). Dementia caregivers are also more likely to have depression than caregivers for people with other chronic health conditions (Schoenmakers, Buntinx, & Delepeleire, 2010). In general, dementia caregiving can be very burdensome and may lead to serious health problems (Kaschowitz & Brandt, 2017; Rosa et al., 2010). There are studies that are contextually relevant to Nigeria on the stressful nature of dementia caregiving and the negative outcomes of caregiving stress (Corey & McCurry, 2016; Mavundla, Toth, & Mphelane, 2009; Ogunniyi et al., 2005). However, caregiving is not always viewed as burdensome by the caregiver. Even when dementia caregiving leads to major adjustments of caregivers’ lives and routines (Corey & McCurry, 2016), some may still find the experience satisfying and fulfilling (Corey & McCurry, 2016; Okoye, 2012; Pharr et al., 2014), while others may be glad when? the caregiving phase is over. In terms of the demanding and stressful nature of dementia caregiving (Penrod et al., 2012; Sharma et al., 2016), it may be helpful to identify some of the supportive and less supportive practices of these female caregivers. For example, do they seek advice from health

professionals, belong to support groups, get or request assistance from other family members? Some of these practices may have implications for dementia caregiving. To help inform interventions that may be effective for reducing caregiving burden in Italy, Rosa et al. (2010) found that caregivers’ needs included the following: knowing more about dementia (diagnoses, knowledge and therapy), educational needs (better communication, cognitive and behavioral disorder management), and emotional and psychological support. These findings are relevant to the current study. Although this study did not specifically focus on caregiver burden while exploring informal caregivers’ perceptions of dementia and caregiving experiences, some of the interesting findings are related to caregiver stress and supports for the caregiver. More so, identifying and addressing some of these issues may help improve the health and wellbeing of the caregiver and quality of care provided for the person with dementia (Okoye, 2012; Togonu-Bickersteth & Akinyemi, 2014). 2.7 Help Seeking by Dementia Caregivers This sub-section describes some of the factors that influence caregivers’ help-seeking behavior. For example, people such as caregivers in the region may erroneously dismiss symptoms of dementia as part of being old or madness (Berwalda et al., 2016; Guraya et al., 2015; Khonje et al., 2015). This may lead to poor understanding of the needs of people with dementia, thus affecting help-seeking behaviors of caregivers (Okoye, 2012). This could be because the caregivers do not grasp the importance of specialized care for persons with dementia and, as such, may not seek recommendations from health and other allied professionals. Furthermore, some Nigerian communities may consider those who put their older parents in long-term care institutions (e.g., nursing homes, residential care facilities) as being ungrateful and unkind, and such acts are taboos (Okoye, 2014). As a result, some caregivers may not engage in these acts because of the belief that something bad may happen to those who abandon their parents in nursing homes, especially if their own parents lay curses on their children (caregivers) for abandoning them (Okoye, 2014). Regardless of these issues, the women, due to their strong sense of obligation as the family-appointed caregiver, may not discuss the burdens of caregiving they experience. This is because it would make them seem like complainers, and they may feel guilty if they view themselves that way (Okoye, 2012; Pharr, Francis, Terry, & Clark, 2014).

Additionally, the interaction between family members and health workers may influence help-seeking behaviors. Health workers play a vital role in supporting dementia caregivers in the community, especially when they are willing to listen and educate, are able to provide emotional support, and are able be non-judgmental and respectful (Neville, Beattie, Fielding, & MacAndrew, 2013). However, poor knowledge and attitudes toward people with dementia may be exhibited by health workers who are supposed to provide help for families in need of expert dementia care advice. Mavundla, Toth, and Mphelane (2009) found that some nurses do not take questions from families about mental disorders seriously, and such perceived lack of empathy may discourage families from seeking help in community health centers. Other families in the study showed dissatisfaction over the level of mental health education provided in the medical facility, as this meant they had to research the disorder without professional assistance. According to Uwakwe (2000), other factors that affect seeking dementia care help from a medical institution in Nigeria are: discouraging advice by friends and family members, financial difficulty, lack of time, transportation issues, lack of support from friends and family members, and seeking alternative care (traditional/faith based). Further, Nigerians are quite religious, and religious organizations significantly influence some of the actions and behaviors of the people. Uwakwe interviewed 10 religious ministers in Eastern Nigeria and found that all ten believed evil spirits cause dementia, while 90% of the participants did not support orthodox dementia care and treatment. The influence of religious ministers in dementia care is salient in Sub Saharan Africa; in Tanzania, (Hindley et al. (2016) found that people go to Christian faith healers and traditional healers to seek solutions for dementia. Similarly, traditional healers are more common in Nigeria than is orthodox medical care, and the lack of a unifying mechanism for healthcare service provision between these two bodies makes accessing mental healthcare difficult (Uwakwe & Otakpor, 2014). Because of the distrust between both parties, families dealing with dementia in rural communities may be discouraged by traditional healers from seeking help from health professionals, and, on the other hand, health awareness campaigns may also miss the opportunity to use traditional healers to disseminate useful information about mental health like how to manage dementia. In Nigeria, studies about the influence of culture on dementia care are scarce; those conducted by Ogunniyi et al. (2005) and Uwakwe (2000) are over a decade old, and their studies

did not focus on women. However, in most African traditional families, women are the designated caregivers, not men. Also, the study by Adebiyi et al. (2016) only identified dementia enacted and implied stigma without describing how they may relate to dementia caregiving and caregiving experience. By using Nigerian women informal dementia caregivers as the study participants, this study captured the experiences of people who are the primary dementia caregivers in the country. The findings from this study help inform long-term care policies development in a rapidly aging Nigeria.

Chapter 3: Methodology 3.1 Introduction This chapter discusses the methods used to address the research question and aims of the study. As such, it describes: the methodology, sampling strategy, data collection (interviews), data analysis, focus group discussion, and trustworthiness and rigor of the study. Ethical approval for the study was granted by the Institutional Review Board of Miami University, Ohio (see Appendix G for a copy of the letter). 3.2 Methodology As mentioned in Chapter 1, the research question for the study was: What are the experiences of female informal dementia caregivers in Awka, southeast Nigeria? More specifically, a qualitative descriptive research approach was used. This approach focuses on capturing the who, what, and where of events, and in the process, allows the researcher to gain more knowledge about a poorly understood phenomenon (Colorafi & Evans, 2016; Denzin & Lincoln, 2018) such as dementia and dementia caregiving in Nigeria. 3.3 Sampling Strategy for the Interviews Sampling type. A purposive sampling method was used to recruit twelve (12) participants. This type of sampling ensures an appreciable level of consistency in the type of information/data collected across selected participants. Inclusion criteria were: female; age 21 or older; resident of Anambra, Nigeria; informal dementia caregiver for at least six months or more; and able to complete the interview in English (and/or Igbo language if need be). A minimum age of 21 years was used because Nigerians who are 21 years or older are likely high school graduates, in college, or college graduates, and may be able to articulate their experiences better than those who are younger. Some may be married, and as such, their experiences may be influenced by their roles as wives and/or mothers. Two of the participants identified as dementia caregivers but also added that the persons with dementia they cared for died recently (a few months before they were recruited). Sampling location. Anambra is a state in the southeast of the country (see Appendix H) with a population of over 4 million (Brinkhoff, 2017). Most people in the state identify as Christians, but some still hold on to their traditional beliefs (e.g., Odinani). Together, Nnewi and Onitsha cities make Anambra one of the biggest industrial and commercial hubs in Nigeria; Awka city is the state capital (Anambra State Government, 2017). Current demographic

estimates may be imprecise, but Nnewi is reported to have a population of about 515,000, while Onitsha and Awka have population sizes of less than 400,000 each (Brinkhoff, 2017). Most of the state public servants live in Awka; the traders and business merchants live in Onitsha and Nnewi. Presently, primary and secondary school enrollment in Anambra state is argued to be among the highest in the country. There are four universities and other tertiary institutions located in the state. Although poverty is a major national issue, the state has the lowest poverty rate (Anambra State Government, 2017), the fourth highest literacy rate, and the eight highest English language literacy rate among the 36 states in the country (National Bureau of Statistics, 2013). Participant Recruitment. Participant recruitment was conducted with the help of a community leader referred to as the gateway consultant in the study. Most of the participants were recruited through the geriatrics outreach center of the only teaching hospital in the city of Nnewi. The geriatrics center is located at the outskirts of Nnewi, and it serves the neighboring villages surrounding the city (see Appendix H for the location of Nnewi in Anambra state). The gateway consultant, a senior registered nurse, worked at the geriatrics outreach center. In addition, two participants were recruited directly with the help of medical doctors from the research setting. For each participant recruited, the gateway consultant or the medical doctor spoke to the contact person of the family of the person with dementia. After explaining the research to the families, the contact information of those who showed interest was sent to the research team with their consent. A member of the research team, a PhD candidate from Nigeria who resides in the research setting, contacted the caregivers and conducted the pre-interviews at a venue of their choice. This was to ensure the participants met the inclusion criteria. Afterward, eligible and interested participants were contacted by the primary investigator for a phone interview. 3.4 Data Collection Interviews. This study included in-depth, semi-structured interviews (via telephone) using an interview guide (see Appendix C). The interview guide explored questions about meanings given to dementia symptoms, challenges of caregiving, supports for caregiving, the joy derived from caregiving, and so on. Whenever it was required, the researcher probed further on participants’ responses for clarification. This process also helped provide a rich description of important concepts that emerged during the interviews. The participants gave informed consent

(verbal) before the interviews, and all interviews were audio recorded. The interviews were in English and they lasted for approximately one hour and were transcribed verbatim by a transcriptionist. Potential identifiers were removed to ensure confidentiality of participants. Training of the screening support person. The participant screening phase involved asking questions that ensured potential participants met the inclusion criteria of the study. The screening phase also involved ensuring participants had some information about the study before agreeing to participate in the study. The participant screening support person (i.e., the PhD candidate who lives in the community where data were collected) was trained on research ethics and how to conduct screening exercises for the qualitative study. He was considered an adequate resource person for the recruitment and pre-data collection exercise due to his good knowledge of the research setting and overall skills. The screening support person (research assistant) also worked closely with the gateway consultant during the recruitment of participants. He met with every person referred by the gateway consultant as a potential participant. Using recommendations from Goodell, Stage, & Cooke (2016), the research assistant was trained on protecting the participants against social, physical, psychological risks and the importance of maintaining the confidentiality of the participants. A good source for training data collectors on ethical standards required for researches involving human subjects is the Collaborative Institutional Training Initiative (CITI) (www.citiprogram.org), which was required by the researcher’s IRB. Participation in CITI training was free. He was also given a brief training on qualitative research. This prepared the research assistant to explain what the study was about to the participants being recruited during the pre-interviews. WhatsApp, a video calling mobile application, was one of the tools used for communicating with the pre-interview support person (research assistant) and for part of his training. Memo writing and other field notes. The purpose of memo writing is to take note of concepts during the interviews that should be explored further to provide better descriptions to answer the research question(s). Through memo writing, the researcher recorded key parts of the overall raw data in order to stay connected with the objectives of the study (Denzin & Lincoln, 2018). With the help of written memos, the researcher was able to identify non-verbal expressions (e.g., change in vocal tone, reluctance to respond, laughter, sadness, anger in one’s voice) that helped to make more meaningful interpretations of participants’ comments. Memos were also used to identify concepts from participants’ interviews that required further probing;

sometimes these were from written summaries of what the participant said after the audio recorder was turned off. Apart from written memos, field notes of other encounters during the data collection that were important to the study were taken. For example, feedback from meetings between the gateway consultant and the research assistant, notes on suggestions from them about what was peculiar, significant, or worth looking into, were helpful in directing the research. Their inputs were important during the data collection and analysis. Data saturation. According to Fusch and Ness (2015), “data saturation is reached when there is enough information to replicate the study, when the ability to obtain additional new information has been attained, and when further coding is no longer feasible” (p. 1408). Data collection in the study stopped when it seemed like data saturation was reached. Furthermore, focus group discussions were later included to strengthen the findings from the study and to increase the study’s trustworthiness. 3.5 Data Analysis Thematic analysis. This is a method used to identify, analyze, and report themes within the data collected. Themes capture what is important in the data in order to best answer the research question, and they represent elements of meanings attributed to participants’ responses (Braun & Clarke, 2006). Data analysis commenced at the time of data collection and Dedoose (version 4.3), a software for qualitative data analysis, was used for data management. The software was used to securely store and retrieve data, create and manage codes, organize data, and develop themes. Coding and formation of themes. The formation of codes and themes involved an iterative process that can be taken in steps. The steps listed are guided by Bryman (2012) and Braun and Clarke (2006). First, audio transcripts and field notes were meticulously read and re- read to ensure familiarity with the data and the information they contained. A code manual containing broad codes was developed during the process. This helped to provide a trail of evidence of the study (Fereday & Muir-Cochrane, 2006). Second, initial codes were generated by identifying interesting features in the data such as words or phrases that were important and related to the research question. Third, similar codes were identified and merged to form themes that reflected the purpose of the study. Fourth, themes and potential themes were reviewed to ensure they are applicable to the research question and objectives. The fifth step included

reviewing contents of the themes and refining and renaming some of the themes where necessary to develop a clear definition of what the themes represent. The sixth step involved examining how the themes were linked to each other by identifying similar and differing views, merging themes to form larger themes, and sometimes noting compelling excerpts from the data that supported the major themes. 3.6 Focus Group Discussions To deepen the understanding of the studied phenomenon as well as strengthen the trustworthiness of the study, four focus groups were conducted based on the findings from the data analysis of the interviews. Focus groups are designed as series of discussions involving a defined set of participants, on a particular area of interest, in a nonthreatening, nonjudgmental environment (Kruger & Casey, 2009). Questions that represented the key findings of the study were shared with the focus groups to gain more insight; it also gave the researcher an opportunity to identify similar and opposing views related to the findings. Sampling. A purposive sampling method was used in recruiting focus group members. More specifically, Nigerians living in Ohio were invited to participate via phone calls and face- to-face conversation. Some of the focus group members were recruited after sharing the purpose of the research at a Nigerian women’s social meeting/event. Additionally, some of the participants were recruited through snowballing (i.e., they were contacted about the study with the help of those who had been recruited). Inclusion criteria were: adult male or female who lived in Nigeria for at least 20 years; from the southern part of Nigeria (the same general areas where the dementia caregivers lived); presently living in the U.S. for a minimum of two years; residing in Ohio; and able to communicate in English language. Although education level was not part of the inclusion criteria, all participants had post-high school (tertiary) education and were working in the US. Twenty-one people were successfully recruited, seven (7) men and fourteen (14) women. Some of the participants were provided with written information about the study, while some received verbal information. All participants were assured of their confidentiality, that their participation was completely voluntary, that they had the right to drop out whenever they wanted, and that they were not obliged to answer all the questions posed during the focus group discussion. They all verbally gave informed consent to participate in the study.

Focus Group Procedure. The first focus group included three (3) men, the second included four (4) women, the third included four (4) men, and the fourth group included ten (10) women. The researcher, as the moderator, arranged the focus groups, and the sessions were held at locations that were convenient for all participants involved. The focus groups were gender separate to minimize response bias from the participants. The researcher wanted the men to feel comfortable sharing their views without fearing how women might react. For example, it was likely that the men may not have wanted to share their views about caregiving being a woman’s responsibility if women were part of their focus group. Additionally, the women may not have felt comfortable sharing their views about men’s poor contribution or support to caregiving in the family if men were in the same focus group with them. At the start of each focus group meeting, the purpose of the study was re-explained, and the participants were reminded that they were participating voluntarily and that they were not mandated to answer any question they were not comfortable with during the discussion. The researcher directed the questions and made efforts to include all participants in the discussion. The focus group questions were semi-structured. Probes were used to clarify views that needed further explanation. Some of the questions in the discussions were about how dementia symptoms are viewed, the likely barriers to caregiving, issues of providing support for caregivers of people with dementia, the role of religion in coping with caregiving stress, and so on (see Appendix E for interview guide). Some of the questions were asked in a way that showed that the researcher was trying to gain more insight about what caregivers said in their interviews. For example, the focus groups were asked: Some of the caregivers said being a caregiver helps protect the family’s image and the person with dementia because the symptoms are somewhat shameful. What do you think about these views? Each of the focus groups lasted for about an hour. All focus group discussions were conducted in face-to-face meetings except the third focus group meeting that was done over a telephone conference call. All the discussions were in English and were audio recorded and transcribed verbatim by a transcriptionist. The same data analytical approach used for the data collected from interviewing the caregivers was used to analyze the focus group transcripts. However, part of the process was done manually, in addition to using Dedoose software.

3.7 Trustworthiness of the Study As mentioned, the focus groups helped to strengthen the trustworthiness of the study. Additionally, other strategies recommended by Hadi and Closs (2015) were taken to ensure trustworthiness. They are described below. Reflexivity. The researcher made field notes about personal reflections to identify biases. Apart from managing areas of potential bias, the researcher’s cultural similarity with the participants played an important part of reflexivity during the study; it helped in identifying shared meanings about dementia symptoms and caregiving, and areas that deserved further probing. Audit trail. This involved having detailed descriptions of the techniques used in data collection and analysis. An example of a tool used for audit trail is the documentation of the steps taken in the research and the codebook used during data analysis. Peer debriefing. This involved discussing the research methodology, data collection, data analysis, and resulting interpretations with a peer who is a skilled qualitative researcher and who is not directly involved with the study. A skilled qualitative researcher with several years of experience was involved in the peer debriefing process. She provided valuable suggestions on the appropriateness of the data collection strategies and the themes generated during the data analysis. To achieve this, bi-weekly meetings were held with the peer as often as possible during the period of sample recruitment, data collection, and analysis.

Chapter 4: Study Findings 4.1 Introduction This chapter begins with demographic information for the 12 female caregivers interviewed and a description of the 21 participants in the focus group discussions. Next, the themes that emerged in the data analyses are discussed in two segments for each theme: the female caregivers’ perspectives and the focus group participants’ insights. 4.2 Demographic Characteristics of Participants Female dementia caregivers Twelve women residing in southeastern Nigeria who identified as dementia caregivers provided the primary data in the study. See Table 1 for information on participants’ pseudonym, age, marital status, education level, work status, and caregiving situation. As indicated in the table, their ages ranged from 33 to 76 years (Mean = 48.9, SD = 13.32). Ten of the 12 reported that they lived with the person with dementia, while one visited her elder sister daily and the other visited her mother monthly. Most of the participants were married. All had a minimum of high school training with most having college or higher education (tertiary). It is important to add that the dementia severity of the older people cared for was implied from the caregivers’ interviews. Given that dementia is not a common term in Nigeria, the researcher did not ask specific questions about severity of dementia of the older relatives cared for. This is because most of the caregivers seemed to struggle with making sense of dementia symptoms during the interviews. However, most of the caregivers described those they cared for as needing help with activities of daily living (e.g., bathing, eating, grooming) and memory difficulties.

Table 1. Demographic Characteristics of Participating Caregivers ID# Pseudonym Age Marital Education Occupation Resides with (Years) Status person with dementia 1 Mary 58 Widow Tertiary Retired Public yes Servant 2 Bola 48 Married Tertiary Public Servant yes

3 Rita 33 Single High Small yes School Business Owner 4 Esther 40 Married Tertiary Nurse yes 5 Jessica 52 Married High Small yes School Business Owner 6 Nene 57 Married High Small yes School Business Owner 7 Daniela 45 Married Tertiary Public Servant yes 8 Ada 76 Married Tertiary Retired yes Teacher 9 Chika 32 Married Tertiary Small No but visits daily Business Owner 10 Fatima 37 Single Tertiary Teacher yes 11 Gina 44 Single Tertiary Rev. No, visits Sister/Nun monthly, pays for caregiving 12 Harriet 65 Married High Unemployed Yes School

Focus group participants Twenty-one people (comprising four groups) participated in the focus group discussions. As explained in Chapter 3, two groups included only men (3 in one group, 4 in the other) and the other two groups included only women (4 in one group, 10 in the other group). All participants were Nigerians who lived in Nigeria for more than 20 years and currently resided in the United States for a minimum of two years. Their views helped to provide contextual illumination on some of the sociocultural factors associated with dementia caregiving described by the Nigerian female caregivers initially interviewed. See Table 2 for a demographic profile of the participants. Table 2. Profile of focus group participants

Focus group participants (N=21)

Number of focus groups 4 groups: 2 male groups (3 in one group, 4 in the other), 2 female groups (4 in one group, 10 in the other group). Gender 7 men; 14 women

Age Men: 33 – 43 years of age (mean = 36.7, SD = 3.73) Women: 1st Group (4 women; 29 – 41 years of age, mean = 32.8, SD = 5.68) 2nd Group (Although ages of most participants were not available, the youngest was 29 years and the oldest was 59 years) Education All participants: tertiary level/above high school

4.3 Themes As mentioned at the beginning of the chapter, themes discussed in this section emerged from the caregiver interviews and were later presented to the focus groups for further discussion. The themes include: making sense of dementia symptoms, perceived caregiving challenges and support, and “why we do it.” Table 3 lists themes and sub-themes. A discussion of each theme follows.

Table 3. List of Themes and Sub-themes

Themes Sub-themes Making sense of dementia symptoms Dementia symptoms and age Brain/mental disorder/madness Sorcery Perceived caregiving challenges and Cost of caregiving and financial support support Sharing of caregiving responsibilities Faith as a source of support “Why we do it” Caregiving provides protection Caregiving is an obligation There is reward from caregiving Family and emotional connection

4.3.1 Making Sense of Dementia Symptoms The theme making sense of dementia symptoms describes participants’ views of dementia symptoms and what, in their opinion, are the causes of dementia. Since persons with dementia may experience symptoms such as disorientation, their caregivers may struggle with how to make sense of what their relatives who are living with dementia are going through. The theme also describes how a person with dementia is viewed in the study setting (Anambra state). Overall, participants associated dementia symptoms with aging, mental disorder/madness, and sorcery. Additionally, some participants who associated dementia symptoms with aging, also associated the symptoms with sorcery or madness/mental disorder, while some suggested people in their community associated dementia symptoms with mental disorder/madness, and sorcery. What follows is a brief description of each. Dementia symptoms and age. Some participants made sense of dementia symptoms in terms of old age alone, not as the result of a disease. For example, Esther described the cause of dementia as: “I just say [think] that it is old age, which is to my own understanding; I don't even know because she has not been sick; we haven't been going to the hospital.” Another participant (Chika) described dementia symptoms as: “I call it age [older age]; I call it age because I don’t know what to call it, because I don’t know what else to call it.” Esther and Chika’s comments

suggest a sense of bewilderment about dementia symptoms and the difficulty of trying to attribute the condition to anything apart from aging or being older. In trying to make sense of her husband’s (in his eighties) symptoms, Ada stated: “What I understand is that it’s [dementia] the problem of the old age, because when he was young he wasn’t behaving like this.” Her comment suggests that attributing dementia symptoms to problems of older age seems like a logical explanation (of dementia), especially when one compares the present state of health of the person with dementia to when the person was younger. Some participants also seemed to assume that outsiders dismissed dementia symptoms as older age-related and consequently minimalized the actual impact that dementia had for families. According to Mary: “People see it [dementia] as old people’s sickness, so they don't have much attachment to it. In the general understanding, it is old people's sickness; they don't know that it is a very serious something.” One participant (Daniela) attempted to learn more about her mother’s symptoms and dementia and to learn how to better care for her mother. She mentioned, “I attended a seminar that one doctor connected us to from the hospital, and the doctor was telling us about dementia, and that is when I now realized that it is old age that is affecting my mother.” Although this comment, like Mary’s comment, might appear to be describing dementia as an inevitable part or problem of old age, Daniela’s comment implies that she later understood from attending the seminar that aging is a risk factor for dementia, which helped to explain why her mother was affected. This was further explained in her response to a follow-up question about how outsiders in her community may view dementia symptoms. She said: Some will say it is hereditary. Some will say it is not. Some will say that it is caused only by old age. But it’s only when you let them know that not everybody that is old that have this loss of memory…like I just told you about my father who at the age of ninety, he can calculate and he can think very well and he didn’t even have this type of sickness [dementia]. So, it is when you let them [outsiders] know that, they will know. Brain/mental disorder/madness. The ability to distinguish between aging as a risk factor for dementia and aging as the cause of dementia identified in Daniela’s comment about dementia symptoms and older age was also supported by another participant’s (Bola) explanation. In

addition, however, Bola associated dementia symptoms with a mental disorder but added that older age or aging does not cause dementia. She said: Some people are looking at it [dementia] as old age. Even some people here are educated, and they see it as a sickness that is associated with age. That is how they are seeing it. They see it as a sickness that is associated with aging. But we, the children, know that it is a sickness because people that are older than him [her father, who does have dementia] are still doing their normal business, farm work, and reasoning. Bola’s comment is an attempt to distinguish between aging as a risk factor for dementia and the belief that dementia is a normal part of aging. Her comment, “They see it as a sickness that is associated with aging” implies that even educated people think aging causes dementia, which she refuted through examples of older people who still have optimal physical and cognitive functions. Mary also described the behaviors of her father as the result of illness in the brain. She said: It's [dementia] a problem pertaining to the brain. The brain is not functioning very well, in my little understanding or knowledge about it. It is an illness or behavior that certain old or middle-age people experience when they are getting old, when the brain is not functioning properly. Again, by stressing function rather than just age, Mary recognizes that age alone is not the cause. Another participant (Ada) initially associated dementia symptoms with wickedness but confirmed that her views changed after knowing more about dementia symptoms from medical professionals. Ada said: “I know that thing [dementia], this his problem; I think it’s from lineage. I think it is genetic [mental disorder] because my mother-in-law was behaving like that. At that time, I thought that she was wicked.” Ada’s comment implies that she initially mistook the symptoms to mean her mother-in-law was being mean/wicked to her. However, her views about dementia changed after she attended a dementia-awareness seminar organized by a doctor. In addition to viewing dementia as a mental disorder, some participants used words like “madness” to describe dementia symptoms. Mental disorder and madness may be similar, but they differ in the way their meanings are constructed in Nigeria, and the latter is likely associated with more stigma. Mental disorder is believed to result from a disease condition or behavioral

defect, while madness is believed by some Nigerians to be partly caused by spiritual forces (Faleye, 2017). An example of the stigma associated with madness is seen in Rita’s comment: She [her grandmother] was back there in the village and the thing [dementia] was starting. They [villagers] called me asking and saying if it is madness that is happening to my grandma. Those statements really touched me; the first time I cried. She added, “I couldn't stand her being referred to as a mad person. It touched me so much, that's why I don't even want her to exhibit those symptoms that people refer to as mad again.” Mary directly pointed out that the use of words such as “madness” to describe a person with dementia were the result of poor knowledge and understanding of dementia. She said, “The person that does not know the meaning of dementia or Alzheimer’s may misunderstand it to be somebody that is mad, or insane, or mentally retarded.” Consequently, she explained that dementia “is a very shameful thing” because of its association with madness or poor mental health. Sorcery. Finally, as mentioned earlier, some participants associated dementia and its symptoms to sorcery or witchcraft. According to Bola, people in her village view a person with dementia as a victim of evil manipulation, such as sorcery. She said: “You know in the village, they will think that somebody is bewitching [or casting evil spell on] that person [with dementia]. They don't know it is a sickness.” Similarly, another participant (Nene) mentioned that outsiders like her church members (Christians) believe that persons with dementia symptoms are victims of sorcery/witchcraft and need spiritual intervention. According to Nene: “You know that church [Christianity] in Nigeria is not like the church over there [U.S./abroad]. I called our church members [Christians] and they wanted to take him [husband with dementia] to those people that worship idol [traditional healers].” Traditional healers in this context refer to indigenous, medical practitioners (herbalists) who practice the religion of their ancestors (indigenous) and not foreign religions such as Christianity and Islam. Sometimes these traditional healers are the point of care for people in rural areas, particularly in developing countries, if they think the problem is of supernatural causes (Subedi & Subedi, 1992). In addition, Nene described the fears that others in the family may have toward people they suspect to be responsible for their relative’s dementia. Nene and her mother-in-law suspected her husband’s dementia is caused by their landlord. They both thought the landlord may be involved in occult evil practices that may be affecting Nene’s husband. Nene said:

I told my mother in-law [about her suspicion of her landlord’s hand in her husband’s condition] and she said I should not go there [her apartment] because I don’t know if the person that built our house, whether the person is in a cult, I don’t know. Nene’s comment suggests that living in the house of someone suspected to be evil and involved in occult activities puts a person in danger of contracting dementia, such as what happened to her husband (who was diagnosed with dementia). Hence, the fear associated with her suspicions made her believe that her husband may be freed from or cured of dementia after they move out from their apartment, far from her current landlord’s influence/reach. Such suspicions and beliefs may be grounded in one’s faith, like the prophesy Nene said she received from her church (Pentecostal/Protestant Christian faith). She said, “I went for prayers; they told me the cause of the sickness [dementia] is from our compound [the landlord].” Although the previous example was one whereby an outsider (sorcerer) was believed to cause dementia in another, there are situations where the person with dementia may be the one suspected of witchcraft or evildoing by outsiders. For example, Gina described the following: My sister in-law and my brother came home and said that my mother is a witch [because of her dementia symptoms]. My mother became worried. She went to her people [her family] and reported that her son said she is a witch. When she came back home, she said people are looking at her somehow [weird/suspicious looks]. If she greets them, they will not respond, so she started staying at home. The above comment by Gina suggests that while people with dementia are trying to figure out the unfavorable changes going on inside them, negative views from relatives such as calling persons with dementia sorcerers may lead to more complications, thereby making the experiences of the person with dementia even more difficult. For Gina’s mother, the stigma associated with being called or viewed as a witch forced her to withdraw from interacting socially in her community. It is important to note that there may be conflicting views regarding whether sorcery is connected to dementia symptoms. According to Esther, “Some people are saying somebody [sorcerer/witch] is trying to manipulate her [person with dementia]. Others are saying it is what she did when she was young that is affecting her.” This suggests that persons with dementia are either victims of witchcraft or are paying for sins they committed in the past (i.e., payback or

karma). The view that dementia is brought on as payment for one’s earlier sins was also identified in Bola’s comment. Bola said, “Some people will be seeing it that maybe the person has committed one thing or the other that made him or her to be in that state [i.e., having dementia].” This hints at the belief that for someone to be going through something as grave as dementia, the person may have done something terrible in the past. Not only are the views hurtful and stigmatizing to family members, such views are very stigmatizing for the person with dementia, as well. Overall, while the views of the participants may show varying levels of knowledge and awareness of dementia, they also indicate the influence of their culture on how dementia symptoms are defined and how a person with dementia is viewed. Focus groups’ insight into this theme. The focus group participants provided valuable contextual information that helped explain why dementia symptoms are associated with aging, mental disorder, madness, and sorcery. Focus group participants were asked what they thought about caregivers’ views that dementia is an inevitable part of aging. A female participant responded: I don't think that fact is right. I have seen very old people who still remember and who don't have dementia in their old age. But dementia is common in the elderly, but that doesn't really mean that when one gets old he gets memory loss. Similarly, one of the male participants in the focus group discussion explained: “It [dementia] usually comes with old age, but I won’t say it is inevitable, because there’s a lot of old people out there that aren’t afflicted with dementia.” To explain why some of the caregivers in the study may view dementia as an inevitable part of aging, one of the focus group participants said: Well, back in Nigeria they [Nigerians] see dementia as aging; it’s like once you’re older, once you’re getting old, definitely you’ll have dementia…So they feel it’s a normal process to go through; nobody saw it as a disease or you are suffering from it. No, they see it as this is the way it is once you’re above 70 or 60 [years]; you start losing your memory, you start behaving like a kid, you start depending on people to help you. The above description indicates that although some participants do not view dementia as an inevitable, normal part of aging, they believe people in Nigeria may see dementia as an inevitable result of getting older. Additionally, some of the caregivers’ views about dementia symptoms and witchcraft/sorcery were explored in the focus group discussions. The participants

were asked about their thoughts on the belief that dementia can be caused by witchcraft. One of the participants said: Being from the continent of Africa, there are different ways people see things. The African culture is vast, and there’s a lot of mix up and complications with mental health and sorcery. Culture plays an important role here. Some people think there’s no natural illnesses. It [dementia] could be as a result of karma or someone trying to get at you. The statement above suggests that the participant believes that in African culture, phenomena or issues that are poorly understood (e.g., mental disorders) are thought to be related to the supernatural/mystical. Similar to some of the female caregivers’ comments, the participant’s description also indicates that people may believe dementia results from karma for the wrong/evil an older adult committed when he/she was younger. However, the participant also added “I don’t believe it’s witchcraft,” in order to distance himself from a belief (i.e., dementia is caused by sorcery) he considered to be superstitious. Lack of dementia awareness was identified as one of the factors causing people to attribute dementia symptoms to sorcery. A female participant said, “I was fortunate enough to enlighten my relatives, because my elder sister was in that kind of mental state [lacked dementia knowledge]. She wanted to call my daddy a wizard.” Another participant provided a similar description. She said: How many people know what dementia is in Nigeria? They just see it and call it witchcraft, because once someone is sick and they just eliminate typhoid and malaria, it must be a witch or one wizard [manipulating the person with dementia]. So that could be very hard to take away from the Nigerian society, except if the society is enlightened. In one of the focus group discussions, participants were asked about their views on some Nigerians who describe dementia as madness. One of the participants responded, “Dementia can be defined as a mental disorder, because it has to do with one's mental thinking or mental wellbeing. It can be defined as a mental disorder, but saying it is madness is ignorance.” Some of the participants described those who view dementia as madness as having “layman thinking” and being “ignorant.” Another participant described how being ignorant influences help-seeking behavior. He explained, “People will start to go to the church to seek for miracle, or to go to a

native doctor [traditional healer] to get a cure, saying it [dementia] could be madness or a spell.” However, another participant had a different view about dementia, saying “It can also be defined as madness, too, because once one doesn't think right, doesn't behave right, and have memory loss, you can say the person is mad.” One of the participants tried to explain why some people in Nigeria may view dementia as madness by stating, “It [dementia] could lead to people displaying some type of behavior, and that leads to other people classifying it in different kinds of categories of madness.”

4.3.2 Perceived Caregiving Challenges and Support The theme perceived caregiving challenges and support represents descriptions of what the participants thought were the challenges they faced and what they viewed as supportive to them in their dementia caregiving. These challenges and supports are related to the cost of caregiving and financial support, sharing of caregiving responsibilities, and the caregivers’ faith as Christians. The following are some of the issues identified by caregivers. Cost of caregiving and financial support. The issue of availability of financial resources for dementia caregiving was common to all the caregivers. Dementia caregiving can be expensive, because most caregivers had to provide medical expenses, special needs (e.g., specific meals), personal care, and round-the-clock care. A description of the high cost of dementia caregiving is seen in Daniela’s comment. She said: The problem we have is that at times we don’t have money to buy him [person with dementia] drugs because they prescribe a lot of drugs for him; one for brain, one for liver, the one that they said he will be drinking for heart, and at times they will discover one thing and we will go and buy it, and they are expensive. According to some of the caregivers, once a person has dementia, everything about the person becomes expensive. For some caregivers like Nene, most of her finances are spent on frequent hospital visits for her husband with dementia. In addition to the medical costs, caregivers who live far away from the medical centers and do not own vehicles struggle with the cost of transporting the person with dementia to the hospital. This adds to the cost of caregiving. Gina explained: I am supposed to take her [mother with dementia] for [medical] checkup; she is supposed to see the doctor on Monday. But the [transport] means of going there is my problem now because she is not walking, so we do charter [rent] a car that will take us to that place [the hospital]. That place is too far. Some of the caregivers are low-income earners, and they had to make difficult compromises in order to accommodate some of the cost of providing care. An example is Chika’s situation. She described: Things we find difficult is at times you know situation of things now is very, very hard and I don’t have much thing [money] on me. The little one I have, the one I am using for

business, I borrowed it from the bank. On that [loan] still, I am taking care of my father with that [loan]. So, I am just managing and praying to God for assistance. To bear the cost of caregiving, several participants reported that they received financial assistance from family members, friends, and other members of the community. For some, financial support may come from their siblings. For example, in referring to her father who has dementia, Mary said: “His other children [Mary’s siblings], they do send money every month, so we don't have problem with money to buy his drugs as prescribed by the doctor and even for his checkups [medical].” Another participant (Rita), who cares for her grandmother, mentioned: “Sometimes, when I don't have money on me, I go to him [her uncle, her grandmother’s son] and ask him for money. He does give me, too.” Although sons and older male relatives typically are the ones who provide financial support, some of the participants mentioned that financial support can also come from the women in the family. Sometimes women in the family provide financial support to the caregiver because they have the resources (e.g., are gainfully employed, married to rich husbands), but some women provide financial support even when they lack the resources to do so. For example, Ada described how her daughters help with financial support. She said: The people that usually help us are the girls [her daughters], though they have their own family. They don’t even have jobs, but when they have little [funds], you know, girls, they like their parents, they send it to us. [They] be calling on the phone and asking us how we are managing. And if they have anything, they send. In some families, financial support for the caregiver may be a result of a collective effort from different members of the family. An example is from Jessica’s comment: … My brother used to give me money for fuel [vehicle gas]. Then, the one [Jessica’s uncle] my father [person with dementia] is senior to…once in a while, he will come and bring some money for taking care of him. Then some of our in-laws, sometimes, my immediate younger sister, her husband is in the U.S. now. Most of the time, he sends money to buy provisions [groceries] for him [Jessica’s father]. The financial support may come from an informal payment arrangement that serves to encourage/support the caregiver. Harriet explained: “My elder brother will give me money for feeding her, for just looking after her, buying food, for everything...I don’t have problem in that side [in terms of financial needs].” Sometimes, however, family members’ views of the cause of

dementia determine their willingness to provide support. For example, earlier, while describing the first theme (dementia symptoms and age), Gina said her brother (the eldest sibling) and sister-in-law viewed their mother with dementia as a witch. It is conceivable that this is the reason for the limited financial support from part of Gina’s immediate family. She explained: If I call them [her brothers] on the phone… in case of financial need, I will tell them, ‘I need assistance, bring money,’ they will say, ‘If I have, I will bring…’ that's how they do [tone of disappointment]. But that one that is having problem with my mum [the eldest who thinks their mother is a witch]. He doesn't pick up my call, doesn't call back, and doesn't come home. Sharing of caregiving responsibilities. All the caregivers described dementia caregiving as physically demanding and stressful. Some said the time-consuming nature of dementia caregiving restricted them from doing other things that are important to them, while others said caregiving negatively impacted their health. These problems highlight the importance of sharing caregiving responsibilities to reduce the burden of caregiving. Thus, this sub-theme discussed the issues of sharing and non-sharing of the physical aspects of caregiving responsibilities by family members of persons with dementia. Non-sharing of caregiving responsibilities may arise when caregiving is assumed to be the sole responsibility of a particular person (a woman) in the family. The family-appointed caregiver may view caregiving as an unfair burden, especially when other family members do not provide support. This was explained by Mary when she talked about the reason she seeks emotional and psychological support. She said: At times, you will be feeling like your other siblings left everything for you, and you will be feeling somehow because you are a human being. They are busy doing something [other things] and they don't understand exactly what you are doing. They don't. Some people may be talking or saying rubbish. They may be feeling that after sending money, what again? Taking care of him is more important than that of sending money. Some caregivers said that their relatives/siblings could not provide caregiving support because of the competing demands of their immediate families, such as taking care of their children and spouses. Some family members do not help with caregiving because they are uncomfortable with the tasks (e.g., bathing and toileting) involved, while some who promise to assist do not keep

their promise when called upon. Some of the caregivers expressed that the men in their families, such as their husbands, have no interest in helping with caregiving. According to Esther, “When he [her husband] sees me with her like that [caring for her step-mother with dementia], he will call it drama, and he will just get up and go, so the [caregiving] responsibility is on me alone.” Additionally, there are situations where husbands do not approve of their wives’ caregiving role because it interferes with their roles as wives and mothers. In extreme situations, such as Chika’s, who cared for her father with dementia, her husband physically abused her to make his point. She said: I have encouraged myself to be strong in doing it [caregiving], because the last time I quarreled my husband [they fought about her spending too much time on caregiving] he beat the hell out of me, he even threw all my things away then I came back to my house [father’s house] and stayed. However, some caregivers described the different ways their family members contribute in caring for relatives with dementia. Bola said, “He [her husband] really helps in providing extra care and financial assistance because, even when I am sick and tired, he does it [caregiving] alone.” Another example of sharing caregiving responsibility was described by Rita, who is a caregiver for her grandmother with dementia. She explained: My daughter is around. She is grown, about 18 years, and she has learned the whole process [of caregiving], too. She understands mama [grandmother with dementia], too. If the thing gets so serious, she can call daddy [term of endearment used for Rita’s uncle, the son of Rita’s grandmother].” Rita’s comment is an indication that caregiving responsibilities can be shared between three generations of the family or household. Some participants described another aspect of familial caregiving situations whereby family members take turns every few months to be the primary caregiver. According to Esther, family members can also work out some sort of daily caregiving schedule. She described: I'm taking care of her [step-mother with dementia] every morning, most of the times in the afternoon. But in the night, my brother, the first son, is at home with his wife. And they will feed her in the night and change her diapers for her to sleep. And every night, my brother will be monitoring her.

Other familial support to the dementia caregiver may be available due to a less-than-ideal situation of another family member. An example is given by Ada, a 76-year-old caregiver who has an unemployed adult son. Ada described the following about her son: “He graduated [college]. He has no job. So, all of us are doing it [providing caregiving for Ada’s husband] together.” Ada appreciates her son’s help with activities of daily living (e.g., bathing, toileting, dressing), but she is also worried about her son’s unemployment. She added that she does not know how she will cope without him when he finds a job. Faith as a source of support. All the participants in the study described themselves as quite religious, and they talked about the importance of their faith (in God) and how it helps them cope with dementia caregiving. Some of the participants got help from their churches not necessarily because they had nowhere else to go, but as a benefit of being members of those churches through their practice of Christianity. In terms of faith as a source of support during caregiving, Esther explained: I just take it [dementia] like something that happens to somebody and for me to be a winner in that [caregiving]; it's for me to take it [caregiving] as a gift from God…the only thing is to say to God, “Let the burden be easy.” If you see it like that, you will see that, that thing you are doing [caregiving] will be as easy as [reading] the alphabets. But when you are seeing it as a struggle, it will be more difficult. Esther also added that she endures the stress that comes with caregiving, but she also believes whenever she prays and begs God to remove the stress, God usually answers her prayers and takes away the stress. Ada described how she uses prayers for emotional support. According to her, there was a time her husband’s (person with dementia) health was failing and there was nothing she could do because her family could not provide the money he needed for medical support. While going through the ordeal, she found that prayer gave her comfort and helped her cope with the emotional stress of her situation. She also believes that even though her husband is sick and has dementia, God has kept him alive because of her prayers: She said: God will sustain him [said in a high tone] so that I will have a companion, even if he [husband with dementia] is not well. Because I don’t want anything to happen

to him so that I will have my companion. I don’t want to lose him. I have been praying every day, every day, and God is doing it for us. Because of the belief in the power of prayers in making situations better, participants or their families may invite people who they view as prayerful and spiritually strong to pray for them. Mary and Bola mentioned having religious leaders (e.g., Catholic priests and pastors) who came to pray for them and their relatives with dementia. Similarly, Daniela’s elder sister invited prayer warriors (devout Christians) to their home to pray for their mother (person with dementia), and Daniela believes the prayers are helpful. Focus groups’ insight into this theme. In terms of family support for dementia caregiving expenses, participants believed family members should come together to share the financial burden of caregiving. Although the financial responsibilities may be shared according to the income level of each family member, the men are typically expected to take on the responsibility of providing financial support. The participants added that provision of financial support is highly difficult in poor families, and the lack of support from the government subjects such families and persons with dementia to severe economic hardship. One of the participants further described that in poor Nigerian families, sending money for support to the caregiver is met by other competing basic needs; the caregiver must decide if the money should be used to purchase medicines or used to feed the person with dementia. While exploring the issue of sharing and non-sharing of caregiving responsibilities among family members, some of the focus group members described men as unreliable for caregiving purposes and said that the men are less likely to partake in the physical aspects of caregiving compared to women. Most participants in the study believed women are better suited than men to be caregivers because women are patient, humble, and more caring. A male participant stated: “No African man will have that patience to take care of the elderly [including person with dementia] like that [like the women do], unless that man is the only son [child].” A female participant explained further by saying, “Basically, the women are the last to leave until the person [with dementia] dies; the men can get frustrated and be like… I’m out of here.” A female participant expressed that dementia caregiving is hard for women in Nigeria because some of them perform caregiving without informal and formal support and with very limited dementia knowledge.

The participants also felt that lack of support from husbands of caregivers makes caregiving difficult for the wives, as they are forced to choose what roles they can play in the family. Like Chika’s situation that resulted in domestic abuse and almost ended her marriage, one of the focus group participants described how dementia caregiving ended a woman’s marriage. She said: …There’s a situation where the lady’s mum [person with dementia] had to move in with her, and people with dementia, they are demanding, so it got to a point where she had to quit her job to look after her mum…One thing led to another and it led to quarrel [with her husband]. Then the man [husband] asked her [wife/caregiver] to leave [their marital home]. She took the mum to their [her] family home in another city. Some blamed her, some were with her [supported], but the thing was - that marriage was dissolved. Another female participant used her own experience from caregiving to explain how lack of support for caregiving may lead to mistreatment of the person with dementia because of caregiver burnout. She said: …I’ve dealt with a patient with dementia; I was the only one taking care of her, so it was difficult for me and easy for me losing my patience while taking care of her. I was sleepy, I was annoyed, I was treating her like a child, I was yelling at her. So, it’s the support like she [another participant] said; if I had the support then, if I had all the people [family and friends] helping me, it would have taken the burden from me. Even when formal supports are available, negative views about such supports discourage their utilization. A female participant talked about how the few available adult daycare centers in Nigeria can be used to reduce the burden of dementia caregiving, but added, “People even feel embarrassed to take their people [older adults] there [adult daycare].” Another female participant elaborated: “…They [Nigerians] don’t have an open mind, so if you take your person [with dementia] there [adult daycare], they’ll be like why don’t you take care of your grandma, why do you take her to someone else?” Some caregivers may not seek or want help from outsiders because of the stigmatizing views associated with dementia. One of the female participants explained: “No matter how bad a day you’re having about her issue [dementia], you can’t even tell the next person because, obviously, you’re hiding it [dementia]. So, they [caregivers] have a

problem of a support system.” These statements suggest that negative views/attitudes about dementia symptoms and formal caregiving practices may prevent dementia caregivers from seeking outside help or accessing the few available supports for people with dementia. The role of religion/faith as a source of support for dementia caregivers was also explored in the focus group discussion. One of the participants described how the act of praying might be a coping strategy. He stated: “Being an African myself and knowing the demography of the area, most people tend to believe in religion and put most of their day to day challenges in prayer.” Another participant explained that prayer only works if you have faith. For a caregiver to feel relieved from the stress of caregiving after prayer, she must be a religious person who believes in the power of prayer. Participants were also asked about their views on caregivers’ statements that being practicing Christians helped them (the women) cope as caregivers. The participants believed that those who are active Christians enjoy strong social networks through their churches, and they also have access to the support that comes from such networks. One of the participants explained: “Church is another family on its own. Let’s say one of the members is going through a lot, so they give moral support in terms of coming to visit, bringing gifts, and some might want to help out.” Similarly, another female participant believed that one’s Christian community (church members) can help the caregiver in diverse ways through social, financial, emotional, spiritual, and physical supports. She said: When you’re facing a challenge and you have someone to talk to, someone is praying for you, and there are contributions [financial] for you, people [church members] come do work for you and stay with you, your burden is being shared and you’re not alone. It’s a lot of relief and by the time they [church members] come, other things [issues] can be talked about. 4.3.3 “Why we do it” As mentioned earlier, all the caregivers felt caregiving is very difficult, demanding, and stressful. This theme explores why these women are caregivers regardless of the issues associated with dementia caregiving. In some ways, the theme helps to explain the motivating factors behind dementia caregiving. The reasons participants gave for being dementia caregivers are: caregiving provides protection, caregiving is an obligation, there is reward from caregiving, and familial and emotional connection. These reasons are briefly described below.

Caregiving provides protection. Some of the participants think older people are vulnerable and having dementia increases their vulnerability. This motivates some women to become caregivers in order to adequately protect their older relatives with dementia. According to Mary, “Nobody wants to wash his/her dirty linens outside. You have to protect the person [with dementia], so that people will not laugh at you or talk nonsense about everything. It's better you protect the person and protect yourself.” Mary also believes that one of the positive aspects of being a dementia caregiver is knowing that you are protecting your family’s reputation by hiding the person with dementia from those with negative attitudes about the condition. She described: “It's a protective something; you are protecting your [family’s] image, at least.” She continued her explanation by stating that “if you don't protect the person from outsiders, the family image will be dented. Everybody around you will be talking bad.” Rita gave a similar response when she described the time her grandmother’s dementia symptoms became more noticeable. She explained: “I can't leave her [grandmother with dementia] to go anywhere because she could leave the house. So, I will be with her to prevent her from going outside so people will not see her as that kind of person.” The participant’s comment about outsiders seeing her grandmother as ‘that kind of person’ refers to the negative views associated with dementia symptoms and how such views can affect the identity of the person with dementia. Caregiving is an obligation. Protecting the person with dementia may not always be about the stigma-related views of dementia symptoms. Caregiving may be viewed as an important filial duty that helps to alleviate the conditions of the person living with dementia. For example, Esther explained her motivation for caregiving even when people around her see the role as burdensome. She said: Some people around will say it [caregiving] is a burden, that I took care of my mother [who was sick] and this one [caregiving for her step-mother with dementia] I started again is another burden. Now the question is, will you now leave her [person with dementia] to be starving till she starves to death? We are the ones that will bury her. So, to avoid that circumstance, you have to do anything possible. It is a duty and responsibility but not a big one like that which people around may think.

In addition to seeing caregiving as familial obligation, a participant’s reason for being a caregiver may arise from feeling indebted to the person with dementia. One of the participants (Rita) explained: She [grandmother with dementia] was the one that took care of me when my mother died. I cannot abandon her because she didn't abandon me when I was small. So as the only girl she has, I take care of her. Not that I have something to benefit from it. If I don't take care of her, there is nobody to do so. The statement, ‘if I don't take care of her, there is nobody to do so’ is an indication of the cultural belief that women are usually the caregivers in the family. To buttress this point, it is important to note that while Rita’s mother is her grandmother’s only daughter, Rita has uncles, but the responsibility of caregiving was passed on to her in the absence of her mother, instead of to any of her uncles. However, some participants believed that the woman who is assigned as the caregiver in the family must be committed to her responsibilities no matter the stress involved. Daniela described, “I don’t think that anybody that sucked her mother’s breast can do such a thing [abandon the person with dementia] …because you know, some will say it is a woman’s job.” Having a strong sense of filial duty despite the stress of caregiving was also identified in Harriet’s description of her experience caring for her elder sister. Harriet said: It’s [caregiving] not an easy work; even my children, any time they come here they say look at what you are doing [with tone of disapproval]. Should I kill her or kill myself [to end the suffering]? I will do my best. There is reward from caregiving. At times, caregiving motivation comes from the belief that actions beget rewards, such as something good happening to you in the present (e.g., feeling happy from caregiving) or in the near future. Some of the participants believed that being a good caregiver may yield good rewards, and not being a caregiver for your close relative (e.g., parent, spouse) or being a bad caregiver may result in bad rewards. For example, Esther was asked about the positive aspects of being a caregiver and she responded by explaining the rewards received from caregiving. She said: As I told you before, when you serve a king very well, the kingship will reach you. That is the only feeling. And you know, for you to be free from any curse or

blame from anybody, you just do something [caregiving] like you are doing it to yourself. Esther’s comment suggests that selflessness in providing caregiving prevents unwanted feedbacks/paybacks. Another participant (Daniela) stated that a person who mistreats his/her parents will be mistreated by his/her own children. Daniela further explained this in relation to dementia and caregiving: “They say it [dementia] is hereditary; some inherit it from their own blood [parents] so if that person is treating her mom [with dementia] like that [poorly], how is she sure that she will not have it [dementia]?” This suggests that persons who are bad caregivers should not expect to be treated any better when they end up with dementia in later life. This was better explained when the Daniela stated: “…You know we have law of karma, so I believe that I want my children to treat me the way I treated my mother. Surely, it will be the way my children will treat me.” Another participant, Fatima, used her faith as a Christian to describe the rewards of being a caregiving. Fatima believes that everyone reaps what they sow, and as a good caregiver you will reap good rewards because God will pay you back in a special way. She sees this as a motivation to keep on providing caregiving regardless of the stress involved. Family and emotional connection. The reasons some of the participants are caregivers may be based on the type or quality of relationship they have with the person with dementia and the emotional connection shared. The motivation to be a caregiver because of family connection may be based on the type of parental care the older adult with dementia provided to the caregiver earlier in life. As mentioned by Ada, “The only thing that makes me enjoy doing it [caregiving] is that he is my father, and when he was in his prime…he never hears my cries and leaves me…” Likewise, Rita described: “I love her [Rita’s grandmother]. She took care of me from when I was nine years old till I became a woman. That is why I will take care of her until God calls her as she is old.” In addition, love was found to be a strong motivation for caregiving, as most participants said they do it (caregiving) out of love for the person with dementia. The reason some participants provide dementia caregiving may also be out of empathy or they do not want the emotional upset that comes from watching their close relatives with dementia experience difficulties. Gina explained, “The fact that I don't want to see her suffering,

that's what makes me to be trying [keep providing caregiving].” However, Harriet described suffering of a person with dementia in peculiar way. She said: She [person with dementia] is the only sister I have. I cannot see her dying [suffering] and leave her…even now she is at her husband’s house. I myself, we are [referring to herself] not very happy that she is there because I wanted her to be with me, but due to certain circumstances [Harriet’s poor health condition], my children refused, saying that I am sick, that I will not cope with that [caregiving load], and nobody is helping me. The above comment indicates that Harriet, regardless of her own limitations, wanted to keep providing caregiving for her elder sister with dementia because she views her condition as suffering or dying. Generally, the theme describes, with insightful examples, why participants are caregivers despite the challenges of caregiving they described during the interviews. Focus groups’ insight into this theme. One of the male participants in the focus groups explained why caregiving may be seen as mainly a woman’s obligation by describing the familial obligations of men and women in a typical Nigerian household. He said: You know back home in Nigeria, we believe once our parent is sick, that it is the women in the family that take care of our parents while the men get money to support. So, it still remains so in Nigeria because most times, we [men] leave the house work for the women while the men go to work and provide for the family. A female participant’s view provides further explanation about these filial expectations. She said, “…Some of the family members would be like, okay, it [caregiving] is a lady’s thing. The men will say, let the women or the daughters take care of her [person with dementia] and they [the men] all disappear…” However, a male participant thinks women are given the responsibility of caregiving because they are naturally better suited to do so. He explained: Women – mothers, grandmothers, we believe they have that spirit of patience to go through the caring process. If they could have a newborn baby and take care of the baby, they could as well have the patience to take care of the elderly who has dementia. Like the female caregivers said, the focus group participants believed caregiving may be done with the intention of protecting the family from issues of stigma associated with dementia symptoms. A participant said, “…Mental illnesses are very embarrassing to Nigerians, so when

one of our loved ones isn’t acting right, we try to protect or hide them from the public.” Another focus group participant (male) tried to rationalize the lengths some families of persons with dementia may go to protect the image of the family. He explained: People don’t want to live with the stigma of anything [e.g., dementia] to be on them or the family name. Whatever they can do to keep it [dementia] away from public eyes, they will do. Family name is very important in Nigeria, so I think that’s why they lock up elderly ones with dementia. Another participant added that adult children may lie about the condition to hide the fact that their older parent has dementia. She said: “…Their [persons with dementia] children say they have malaria or they have typhoid, but he/she is locked up in that house. The people [children] don’t want you [the public] to see her misbehave…” According to one of the female participants, caregivers may hide the symptoms of relatives with dementia from the public eye to protect the marriage chances of the single, younger adults in the family. She explained, “They won’t want to marry you [child of person with dementia], and they say, oh, this person’s grand mum [person with dementia] was mad, don’t marry from that family, they have mental illnesses in that family.” Similarly, one of the focus group participants described how a person with dementia may act in a way that results in stigma and shame to the whole family. She said: I have a resident [person with dementia] that said he molested his kids, which was something he obviously did, but he was hiding it because he had his senses, and now that he’s losing it, he had no clue when he said it. So, depending on what they [persons with dementia] say when they were not in their right senses will determine how people will see the family. This comment suggests that people with dementia, because of their poor cognitive abilities, may say things about themselves that ordinarily would have been kept secret to outsiders, and this information may be embarrassing, controversial, or stigmatizing to the person’s family. Thus, informal caregiving helps to prevent such things from being exposed outside of the family. 4.4 Summary The findings presented in the themes in this chapter relate to how dementia symptoms, persons with dementia, and dementia caregiving are viewed in Nigeria through the descriptions of the female dementia caregivers and Nigerians living in the US. The two categories of

participants offered insight on how dementia symptoms are viewed, and their opinions described some of the problems of dementia stigma. The findings also indicated that most families are open to providing support for dementia caregiving, but there are also cases of lack of support for the caregivers. The burden of dementia caregiving is reflected in the shared experiences and opinions of the participants. Some of the caregivers described some ways to cope with the stress of caregiving, while some revealed how they stay motivated as dementia caregivers, despite the difficulties they faced.

Chapter 5: Discussion 5.1 Introduction This chapter discusses the implications of the major findings in general and in relation to informal dementia caregiving in Nigeria. More specifically, this section delves deeper into cultural views about dementia vs. dementia awareness, support systems for informal dementia caregiving, and motivations for dementia caregiving. Next, a framework that describes the key sociocultural factors identified as influencing dementia caregiving is included. This chapter also includes a description of the experiences from the research field, policy implications of the study, limitations and future research direction, and conclusion. 5.2 Cultural Views About Dementia vs. Dementia Awareness Some of the interesting findings in the study relate to how the participants explained dementia symptoms using aging, mental disorder/madness, and sorcery. This indicates an important issue in Nigeria – poor dementia awareness (Adebiyi, Fagbola, Olakehinde, & Ogunniyi, 2016; Kalaria et al., 2008; Nwakasi et al., 2019). Consistent with existing literature about dementia views in Sub Saharan Africa (Berwald et al., 2016; Guraya, 2015; Nwakasi et al., 2019), poor dementia awareness was identified in the way the caregivers attributed dementia to older age. The caregivers referred to dementia as ‘the problem of old age’ and ‘old people’s sickness.’ Although these descriptions may seem like rational explanations of dementia because aging increases the risk of dementia, but such descriptions have implications. Using aging to describe dementia symptoms may result in families not taking the condition seriously, and this can impact the quality of caregiving provided and the wellbeing of the person with dementia (Abbott, 2011; Nwakasi et al., 2019). This is because caregivers with such views are likely not to visit health professionals for dementia-related reasons unless the person with dementia has other illnesses (e.g., malaria, typhoid, arthritis, heart disease) they are familiar with or understand. In terms of stigma-associated views of dementia, using words like madness and mental disorder to describe dementia symptoms are likely indications of poor dementia awareness; additionally, the medicalization of dementia helped influence the view that those with dementia are abnormal (Bond, 1992). Consequently, these factors can result in stigmatization. How these views are contextualized in Nigeria may determine the corresponding level of stigma. As mentioned in the previous chapter, those who are considered to have mental disorders are believed to have brain diseases or conditions that can be medically explained. However, those

who are seen as mad are suspected to be under spiritual attack, in addition to other causative physiological factors (Faleye, 2017). Therefore, because Nigerians are quite religious (Nwakasi et al., 2019), people with dementia who are seen as mad may be more stigmatized than those assumed to have mental/brain disorders because of the suspicions of supernatural influences. Additionally, in Nigeria mental illness is a sensitive issue; to better grasp the impact of the stigma associated with mental illness in the country there is a need to deepen the understanding of how these views are grounded in Nigerian culture (Ae-Ngibise et al., 2010; Armiyau, 2015). First, since there is no word for dementia in the more than 500 languages spoken in the country, most Nigerians with poor dementia awareness rely on how dementia symptoms are perceived to make sense of the condition, and often these descriptions (e.g., madness) are derogatory (Adebiyi et al., 2016; Ogunniyi, 2016). One of the impacts of dementia stigma is indicated in the findings when a caregiver was emotionally upset because her grandmother was described as mad by those in her village. This is in line with a previous article on stigma (Pescosolido, Medina, Martin, & Long, 2013). People, including caregivers who witness situations where those they love and respect are undervalued, made to feel inferior, or excluded from the community, may respond with negative emotions such as sadness. Because of dementia stigma, families in the community may reject any association with families of those with dementia. An example in the findings is families who prevent their adult children from marrying those who are relatives (children or grandchildren) of people with dementia. This finding was also mentioned in Adebiyi et al.’s study on dementia stigma in Nigeria. “Sorcery” was another word used to describe dementia symptoms in Nigeria due to poor dementia awareness. Similar to attributing dementia symptoms to madness or mental illness, those with dementia who are viewed as being under a spell of witchcraft or paying for their evil deeds (karma) are at risk of stigma and the negative impacts of such stigma (Adebiyi et al., 2016; Nwakasi et al., 2019). Some people with mental health conditions such as dementia may be subjected to religious practices that are erroneously assumed to be helpful cures for the condition. For example, taking a person with dementia to church to be cured of their alleged spiritual attacks may limit other options that can be actually helpful to the person, such as getting professional help from orthodox medical practitioners and seeking informed recommendations on improving quality of dementia caregiving.

In some situations, taking people with mental health conditions such as dementia for spiritual deliverance may expose them to abuse (e.g., physical restraint, starvation, shaming) in the process (Edwards, 2014; Okpalauwakwe et al., 2017). Even worse, the person with dementia who is suspected to be a witch or wizard may be abandoned by family members who are either afraid or ashamed of associating with the person. As reported in the findings, the issue of poor dementia knowledge and how people in Nigeria make sense of dementia symptoms is highlighted where children were reported to have abandoned their parents because they had dementia. While considering the impact of these stigmatizing views on people with dementia and their families, it is important to draw attention to another implication of poor dementia awareness in Nigeria. Some younger and middle-aged adults without dementia education may not be aware of health behaviors associated with dementia. For example, people who think dementia is an inevitable part of aging, madness, or from sorcery may be unaware that limited years of education, smoking, excessive alcohol consumption, sedentary lifestyle, obesity, heart diseases, diabetes, and brain injury can increase a person’s risk of having dementia (Baumgart et al., 2015; Peters et al., 2019). Therefore, increasing health education on dementia in Nigeria may help inform people on the dangers of unhealthy lifestyle choices. 5.3 Support System for Informal Dementia Caregiving Similar to several studies (Nwakasi et al., 2019; Okoye, 2014; Penrod et al., 2012; Tanyi, André, & Mbah, 2018), the findings suggest that there is an absence of formal long-term care in Nigeria and family members (adult children) are the source of support for older relatives with dementia. The cultural expectation that adult children should care for their older parents and relatives instills a strong commitment toward informal, long-term care and support within the family system. For this commitment to caregiving to continue, caregivers require support from other family members and from other people (e.g., friends) in the community. Moreover, practicing one’s religion was also identified as a form of support for caregivers in the study because of the impact it seemed to have on their emotional and psychological wellbeing. This is important as studies show that dementia caregivers have an increased likelihood of depression and other poor health outcomes (Kaschowitz & Brandt, 2017; Rosa et al., 2010; Schoenmakers et al., 2010) and some researchers have stressed the need for emotional and psychological support (Rosa et al., 2010). Some of the study participants believed

that praying makes them happy, and some believed that praying can help reduce the burden of caregiving. The belief in the positive impact of prayer on caregiver burden is an indication of the importance of spirituality as a coping mechanism. Religion plays a key role in the lives of most Nigerians, and it may influence how people respond to difficult situations they are facing. For example, a study in the US found that caregivers who are religious or spiritual had better relationship with the older adults they cared for and they also benefitted from reduced likelihood of depression as a result of caregiving burden (Chang, Noonan, &Tennstedt, 1998). Another study, conducted in Nigerian, found that religion was the most used strategy for coping with caregiving (Faronbi, 2018). The emotional and psychological impact of religion/faith on dementia caregiving in Nigeria will benefit from further exploration. Nevertheless, other forms of support for caregiving, such as those from family and friends, may not be available or adequate for caregivers, and in such situations the difficulties of being a dementia caregiver may become more burdening. Being a fulltime caregiver disrupts women’s roles as mothers, wives, and employees/business owners. Trying to fulfill each of these roles can be challenging for dementia caregivers as they struggle with managing complex situations where there is an intersection of their personal choices, cultural expectations, and availability of resources (Kaschowitz & Brandt, 2017; Okoye, 2012). Hence, the fear of being a bad mother, a bad wife, or a bad daughter (i.e., caregiver) may exert immense pressure on these women. The resultant emotional strain of constantly compromising to meet these multifaceted demands is likely part of the stressors that make informal dementia caregiving burdensome and ultimately affect caregivers’ health. Additional stressors associated with dementia caregiving is the financial burden of dementia on most affected families. Without financial help, dementia caregiving and the quality of life of persons with dementia and the caregivers will be affected. Because a high rate of poverty and economic hardships are the realities in many Nigerian families (George-Carey et al., 2012; Okoye, 2014; Togonu-Bickersteth & Akinyemi, 2014; World Bank 2018), most caregivers may be incapable of providing financial support as the high cost of dementia care competes with other basic household needs (Mayston et al., 2017). To help reduce this burden, family members may share the cost of dementia caregiving through monetary contributions – they also purchase items such as medicines and consumables (e.g., toiletries, adult diapers) for the older adult with dementia. According to the findings, the monetary support from other family members may also

be a way to compensate for the efforts of the dementia caregivers. Sometimes these financial supports may come from other people due to the caregiver’s beneficial social network in the community (e.g., church members). The issue of economic hardship may also apply to the siblings and the adult men in the family. They (adult sons or brothers) may be incapable of providing financial support, even though it is culturally expected of them (Mayston et al., 2017; Okoye, 2014). However, in families where financial supports are available, the findings show that being physically available to help with caregiving responsibilities is sometimes considered to be more helpful/important by the caregivers. The unfortunate reality is that sending money as a way of supporting the caregiver and also being physically present to help with dementia caregiving may not be feasible for family members of people with dementia. Hence, compromises have to be made in terms of deciding who provides monetary support and who provides physical support for the caregiver. In some families, men may object to sharing in the physical part of caregiving and cite reasons such as their jobs, family commitments (for those who are married), and distance as barriers to their providing caregiving support. These reasons may not be well received by dementia caregivers who also have similar responsibilities in addition to caregiving. This may be part of the reason some of the caregivers recommended allocating the role of primary dementia caregiver to the adult children for specified time periods. Even though such a recommendation may reduce caregiver burden, it may not be applicable to the sons/men in the families because they are regarded as impatient, uncaring, and unfit to be caregivers. The cultural views by some Nigerians, including the women, are that caregiving is not for a man, and the guilt felt by women who do not provide caregiving (Okoye, 2012) may result in less sharing of non-monetary dementia caregiving support by men. Furthermore, some men who do not want to take part in caregiving also do not want their wives to be involved in caregiving. The findings show that disagreements between these kinds of men and their wives over dementia caregiving may result in domestic abuse or the end of the marriage. In cases where this happened, the women seemed to be caring for their own parents, which begs the question – would there be issues of domestic abuse and marital problems if the person with dementia is a parent or relative of the husband of the female caregiver? Will the caregiver receive more support from her husband if caregiving directly/indirectly benefits him? Will he abandon the woman who is providing caregiving (e.g., for his older mother) without

support because ‘she is a woman/wife’? These questions arose from exploring the experiences of Nigerian female dementia caregivers, and they suggest that there is a deeper issue of gender and power imbalance in Nigerian families, one that can affect dementia caregiving. Nigerian women, often being in disadvantaged positions already, are likely to be exposed to different kinds of abuse and difficulties (Chika, 2012). 5.4 Motivation for Dementia Caregiving Based on the findings, some women (caregivers) will not give up their roles as dementia caregivers no matter how difficult their experiences. Their role as caregiver serves a purpose of protecting the vulnerable older adult as well as protecting the image of the family. Because of the negative views about dementia, caregivers hide their relatives with dementia from the public, and they believe doing this protects the person with dementia and the image of the family. Moreover, once someone is stigmatized, it may be difficult to undo the damage. Hence, caregiving may be done out of negative motivation – women providing caregiving or protection for persons with dementia out of fear of what might happen (e.g., shame, family being labeled as mad) if they do not. Another negative motivation for caregiving arises because women are afraid of being cursed or blamed for being a bad daughter if they do not take adequate care of their older parent (with dementia) as is culturally expected of them. Additionally, the study set out to explore some of the joys of caregiving from the experiences of the dementia caregivers. The study did not discover particular descriptions of the joys of being a caregiver but it identified some positive emotions the women described as the rewards for being a dementia caregiver. More so, these rewards from caregiving may be the positive motivation for providing caregiving. In terms of rewards as motivation for caregiving, people tend to be purposeful about their social interactions with others (e.g., older adults), and whether such interactions yield positive or negative outcomes may determine how they manage in such interactions. For the caregivers, this reward or positive outcome may be about gaining positive emotions (e.g., joy), feeling blessed by God, or feeling satisfaction derived from taking up the family responsibility of being a dementia caregiver. For some women, the motivating factor may be the sense of pride gained from knowing that when an older relative was in need, a family member was always there to help out (Faronbi, Faronbi, Ayamolowo, & Olaogun, 2019).

Another example of such rewards that can be motivating is the belief in the reciprocity of care (Faronbi et al., 2019). The caregivers believed that by being caregivers they are almost guaranteeing that someone will be a caregiver for them in the future. More importantly, they believed that the quality of care you get from your family (adult children) when you are old depends on the quality of care you gave as a caregiver. Thus, good caregivers, when they are old and in need of care, will be rewarded by having good caregivers, while bad caregivers will be rewarded by having bad caregivers (i.e., the belief in the law of karma). According to Camden, Livingston, & Cooper (2011), some caregivers mentioned the good quality of relationship shared with persons with dementia as the reason they provided care. This is in line with some of the findings. Some women are caregivers because of the love they have for the person with dementia, while some described the person with dementia as caring, kind, and a good parent who deserves to be cared for in the best possible way. Beyond the emotional and family connections that may result in women becoming dementia caregivers, Nigerian families take the cultural expectation that women should be the primary caregivers for their older relatives quite seriously (Faronbi, Faronbi, Ayamolowo, & Olaogun, 2019; Okoye, 2012). This is similar to the findings that caregiving is viewed as an obligation. Some women may feel remorseful when they are not in a position to carry out caregiving (Okoye, 2012), while some are worried about the negative remarks from other people, including family members (Faronbi et al., 2019). There are other likely issues associated with Nigerian women’s caregiving role due to family obligation. If the women feel they were unfairly forced into caregiving roles because of such obligations or lack of other potential caregivers, they might become unintentionally abusive to the person with dementia, especially as the burden of dementia caregiving increases (Camden, Livingston, & Cooper, 2011). Overall, there are different reasons for becoming dementia caregivers in Nigeria and providing dementia care despite the various challenges involved, which may reinforce the value of filial piety in the younger generations. Consequently, there might be hope for continued informal dementia caregiving in Nigeria. This is important because of the absence of formal long-term care and lack of formal support for persons with dementia in the country.

5.5 Framework Describing Sociocultural Factors Influencing Dementia Caregiving

Figure 1. Factors Influencing Dementia Caregiving by Nigerian Women

Dementia and caregiving views e.g., dementia is caused by sorcery, threat of stigma, not sharing caregiving responsibilities, caregiving is solely a woman’s obligation

Negative impact The Experience Caregiver of Dementia Positive impact Caregiving

Dementia and caregiving views Reasons for caregiving e.g., families should share caregiving e.g., reward, protection, responsibilities and contribute financial family obligation, emotional resources, being part of a religious group connection and prayers (faith)

Figure 1 is a diagrammatic representation of the different factors identified in the study, particularly sociocultural factors, that influence dementia caregiving in the study setting. The women in the study setting provided caregiving for their older relatives (e.g., parent, grandparent, spouse) due to the belief that there is a reward for doing what they do. This reward may be blessings from God or good karma from being a caregiver. Good karma refers to believing that one good turn deserves another – ‘my children will take good care of me like I took good care of my parents.’ Sometimes caregiving is primarily done by the women because of a sense of family obligation resulting from the cultural expectation that women should be the caregivers for older adults in the family. It may be done to protect the vulnerable older adult and the family from stigmatizing views in the community, or they may be providing caregiving out of the strong emotional bond (e.g., love) they share with the person with dementia. There are some factors identified as helpful to the person providing care for a person with dementia. For example, sharing dementia caregiving responsibilities, including the financial aspects, with family members may reduce the stress of dementia caregiving on the primary caregiver. Other sociocultural factors such as religion/faith – having people pray for you, praying over a stressful caregiving situation, and social support from fellow church members - may help the caregiver cope with the burden of dementia caregiving.

However, some factors were identified as having negative impacts on dementia caregiving. Negative attitudes about dementia symptoms and persons with dementia by family members, friends, and other members of the community may add to the difficulty of providing dementia caregiving. For example, the erroneous assumption that people with dementia are sorcerers or under a sorcerer’s spell and the stigma associated with viewing older adults with dementia as mad or mentally insane may limit the access to specialized care and support for people with dementia. Additionally, the cultural expectation that caregiving is solely a woman’s obligation may limit access to caregiving support from the male family members. In worse case scenarios, lack of support may result in abuse of the person with dementia, especially when the caregiver becomes overstressed from caregiving. Overall, dementia caregiving is impacted by sociocultural factors in the caregiver’s community, and this has implications for the quality of dementia caregiving provided for the person with dementia and the quality of life of the primary caregiver. 5.6 Experiences from the Research Field Conducting a cross-cultural study on an issue that is stigma-related in a developing country such as Nigeria involved some challenges. This was largely because some families of people with dementia seemed unwilling to identify as relatives of persons with dementia. Also, those who identified themselves as dementia caregivers seemed uncomfortable talking about dementia issues with outsiders. This problem was mitigated with the help of the gateway consultant. Most of the caregivers who joined the study and remained through the interviews were those recruited with support from the gateway consultant. It is important to mention that out of the twenty participants recruited in the study, eight withdrew, and seven of the eight caregivers who withdrew from the study were those who were not recruited through the gateway consultant. This may suggest that those who stayed in the study had some level of trust in the gateway consultant, which was why they agreed to be interviewed. This trust relates to their overall safety as participants because of the stigma associated with dementia. Another issue encountered during the study was accessing the physical addresses of some of the participants. For those who lived in the city/towns, their residential addresses or other desired physical meeting points were not difficult to locate for the pre-interview. However, this was not the case for those residing in rural areas. First, it was difficult to contact them via phone calls because some of them were out of reach – likely as a result of poor cell reception and/or

drained phone batteries because of the poor power supply in Nigeria. Second, because their residential addresses were located in villages that were unfamiliar to the research team, it was difficult to locate their homes. More so, mobile phone maps (using GPS) were unreliable to provide directions to the right locations. Consequently, this situation resulted in long drives and walks around the village and asking people for directions in order to locate the potential participants’ homes. Furthermore, there were times when the phone interviews had to be conducted immediately after making contact with some of the caregivers. Some explained that their role as dementia caregivers was time consuming and they could not guarantee their availability for a scheduled interview. Additionally, some of the participants, especially those in the village, suggested this impromptu interviewing because they were not sure of when next they could be contacted because of the issue of poor mobile network reception and low phone battery charge. Thus, some caregivers, after giving informed consent to participate in the study, wanted the interview to commence right then. This meant the researcher had to be flexible with his scheduling during the data collection process. Sometimes this caused the researcher to cancel or reschedule other coinciding activities. Other times, the 5-hour time difference between Nigeria and the U.S. played a role in the data collection. For example, a caregiver in Nigeria who wanted to be interviewed at 8 AM meant the researcher had to be awake at 3 AM to conduct the interview. Apart from scheduling difficulties, the issues of stigma and access to willing participants identified during the recruitment of the caregivers were not experienced during the recruitment of the focus group members. This may be because the Nigerians residing in the US were not recruited to talk about their experiences as dementia caregivers, but to share insights on views of the female dementia caregivers who were initially interviewed. It is also possible that their relatively higher dementia awareness and exposure to issues of aging and dementia compared to the female caregivers played a role in preventing such recruitment issues. 5.7 Limitations of the Study and Future Directions Several study limitations must be noted. After the pre-screening interviews, each of the participants was interviewed only once. As a result, some of the unique opinions they shared were not probed further in ways that follow-up interviews could have offered. However, using focus groups allowed for some of these caregivers’ views to be explored for more insight, and

this process provided an opportunity to ensure the trustworthiness of the study. That is, steps were taken to ensure the collection of rich data that helped to answer the research questions posed. It is also possible that the gender difference between the researcher (male) and the caregivers (women) played a role in the data collection. It is possible that the caregivers shared their experiences with the researcher because they felt their voices were significant if a man was asking them about issues such as caregiving that seems to be more female-related, one that the men pay less attention to in their community. It is also reasonable to consider if the caregivers would have been more open about their experiences if the researcher was a woman like them — someone who they think might have a better understanding of what they were experiencing as female dementia caregivers. Additionally, conducting phone interviews with the caregivers may have reduced the impact of dementia stigma on data collection, and maybe, the caregivers felt more comfortable talking about their experiences and views because of the researcher was not physically with them. However, there is likely important information embedded in the participants’ expressions that may have been missed during such phone interviews. Facial expressions, reluctance in response, body language, tone of voice, and physical environment are better assessed in face-to- face interviews than in phone interviews. Also, having the required skills to establish a trust relationship with the participants in face-to-face interviews may encourage the participants to open up more and describe their opinions/views in more detail. This study is a follow-up to a previous study that explored the perceptions of dementia of Nigerian migrant healthcare assistants in the United Kingdom (Nwakasi et al., 2019). Similar to the present study, the previous study revealed there was poor awareness about dementia and participants’ culture influenced how meanings are attributed to dementia symptoms. These meanings attributed to dementia may influence the quality of caregiving provided. Moreover, when migrants with relatively poor dementia awareness become formal dementia caregivers in a more developed country, there may potentially be new psychological burdens that arise from the sudden realization of the contrasting contextual significance of dementia as a serious medical condition. In this study, the researcher wanted to gain a more in-depth understanding of dementia issues by exploring the views and experiences of Nigerian female informal dementia caregivers.

Although this study further offers valuable insights on dementia views and caregiving experiences in Nigeria, the findings are not generalizable because of the research method used. Conversely, the current study offers a unique description of issues relating to dementia views and caregiving and the role of women and the family in providing support for the persons with dementia. In terms of future studies, the researcher intends to include healthcare professionals and allied stakeholders to explore their views on dementia attitudes, help-seeking behavior of dementia caregivers, long-term care for dementia (formal and informal), barriers to dementia care in Nigeria, and the perceived roles of health professionals in increasing access to dementia care and improving dementia awareness. There is a growing need for an interdisciplinary collaboration in Nigeria to boost research on aging in the country, especially dementia-related research. Findings from the few qualitative studies conducted can be used to design an appropriate survey in the country. It is believed that conducting large-scale quantitative studies that address issues of dementia awareness, stigma, caregiving, and access to healthcare and support will be helpful in pushing for aging policy developments. These studies may shine light on dementia, which is not currently getting the attention it deserves. They may also inspire more studies on dementia and caregiving in the country, and consequently those in leadership in Nigeria will be compelled to commence discussions on how to address issues of dementia and caregiving. 5.8 Policy Implications of the Study The findings show that Nigerians struggle with making sense of dementia symptoms, and any misconceived knowledge of dementia may have negative implications on the person with dementia, the caregiver, and the family. Policies should be designed to raise awareness of dementia. This is important because as Nigeria rapidly ages, dementia risk is also increasing. If the government and other major stakeholders collaborate to produce and disseminate dementia knowledge, people will benefit from such collaborations. Dementia education is particularly important to reduce the threat and burden of stigma associated with dementia. Stigmatizing views about dementia have the capacity to negatively affect the physical, emotional, psychological, and social aspects of the lives of persons with dementia and their caregivers. Thus, dementia-related policies are needed to help protect the dignities and wellbeing of older adults with dementia, their caregivers, and their families.

It may be argued that developing long-term care policies in Nigeria is unfeasible because of other country-wide issues such as child and maternal mortality, malnutrition, HIV/AIDS, heart diseases, weak health system, high poverty rate, and widening socioeconomic inequality in the country (Dauda, 2017; Muhammad, Abdulkareem, & Chowdhury, 2017). However, the impact of not developing long-term care policies in Nigeria will result in continued hardships in families of people with dementia and its older population in general. Some of the reasons for the need for long-term care policies include the following. First, family roles and dynamics are changing, and unlike the past, more Nigerian women now have jobs and combine this role with taking care of their younger children, their husbands, and other family members such as older parents with dementia. Without formal long-term care support, the pressure of such competing demands in the face of scarce resources may result in a poorer quality of life for the women and the whole family; hence, three generations of people in a family can become affected. Second, dementia caregivers always need help. Even for those who are fortunate to receive support from friends and families, the supports they receive are likely not adequate. The notion that families come together to care for their elders is not always true, as is seen in the study findings. Thus, even though informal caregiving is likely to remain the source of long-term care in the country for a while, the government can design policies to strengthen this type of long-term care, as it seems to be more readily available and accessible to most older adults with dementia. In addition, this study is based on the premise that women are the backbone of informal long-term care in Nigeria. To ensure their responsibilities as dementia caregivers are done effectively, the women require training and empowerment programs to improve their education level, decision making skills, income generating ability, help-seeking behavior, coping mechanism mastery, and motivation sustainability as caregivers. Because of how intertwined the lives of caregivers and persons with dementia may be, if the caregiver is struggling with one or two aforementioned aspects of their lives, the quality of life for the person with dementia may also be affected. 5.9 Conclusion Nigeria’s rapidly aging population, increasing risk of Alzheimer’s disease and related dementias, dearth of aging related studies, and lack of long-term care policies may be resulting in an increasing need for informal dementia caregiving. This study argued that there is a pressing

need to understand the experiences of Nigerian female dementia caregivers as they are at the center of informal caregiving in the country. Hence, the study provided insight on Nigerians’ attitudes toward dementia symptoms and persons with dementia, and dementia caregiving. It also described how some of these factors may be impacting women’s dementia caregiving. Female caregivers gained support for caregiving through their families and from practicing their faith. However, poor dementia awareness, such as the belief that dementia is associated with sorcery or madness (dementia-stigma), the view that caregiving is solely a woman’s responsibility, and non-support from other family members, may negatively impact dementia caregiving. Regardless of these issues, and burdens from caregiving, women were providing caregiving because they believed their role is a family obligation, that there is reward for caregiving, and because of the emotional connection shared with the person with dementia. This study recommends that improving dementia education in Nigeria may help to reduce the issues of dementia stigma and burden that impact dementia caregiving. If cultural expectations remain unchanged in the country, informal dementia caregiving will likely remain the main source of long-term care for people with dementia. Therefore, policies should be developed to help support the women who provide dementia caregiving – their quality of life and that of persons with dementia may depend on it.

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Appendices Appendix A: Terminologies Alzheimer’s disease: This is a progressive, irreversible brain disorder that affects the person’s memory and thinking skills. As the disorder progresses, the person may lose the ability to perform simple tasks. It is the most common cause of dementia. Dementia: This is not a disease. It is a collective word used to describe symptoms of mental decline. A person with dementia may have difficulties with memory/remembering, communicating, reasoning, problem solving, and handling complex tasks. Gateway Consultants or Gatekeepers: This is a community leader or elected person in the community with cultural similarity with other members of the community. Gatekeepers are influential indigenes and their attitude towards a project or idea can lead to poor or good reception of the project by the people. Gatekeepers are also referred to as gateway consultants in the proposed study. Health system: According to Ogden in Fried and Gaydos (2012), “health systems are all organizations, institutions and resources devoted to producing actions whose primary intent is to improve health” (pg. 49). Stigma: This is a mark associated with disgrace, or bad reputation, and it can also mean an unfair feeling of disapproval people have towards something. Traditional healers: They are the indigenous medical practitioners in the community with unorthodox practices (in the eyes of western health care) toward health and wellbeing. Traditional healers are arguably the first point of care and first line of defense against diseases for most people in Nigeria.

Appendix B: Consent Form for the Caregivers who were Interviewed?

Dear participant,

My name is Candidus Chibuzor Nwakasi, and I am a student at Miami University, Ohio, USA. I am conducting a research to help understand the experiences of women who are caregivers for people with dementia in Nigeria. You are invited to take a part in this study. If you are willing, I will ask you questions about your experiences as an informal dementia caregiver. This interview will take 1 hour and will be done at the location of your choosing. Your participation in this study is completely voluntary. If at any time you do not want to participate in the interview, you can leave.

I will be audio recording the interview to make sure that I remember all the information you provide. This information will be kept in a locked place where only I will have access to. Your name and identity will not be revealed in the study. Instead, I will use a code number in place of your name in the study. After I make sure that my notes are correct, I will delete the recording and notes.

Some of the questions I ask may lead you to feel emotional or uncomfortable. If you get emotional during the interview, we can take a break or stop the interview. If you feel uncomfortable, you can choose to skip the question or stop the interview.

The information you share with me will be useful in understanding your experiences as an informal dementia caregiver. For taking the time to speak with me, you will be compensated through either transportation money if you choose to not do the interviews at home, or through a 10kg bag of rice. Additionally, I may ask you if I could contact you about any further questions that I may have after the interview. You are free to say yes or no to this request.

For further questions about the study, please contact me at 09032828315 or [email protected] or my advisor Dr. Kate de Medeiros at [email protected] .If you have questions about consent and your rights as a research participant, please contact the Office for the Advancement of Research and Scholarship at [email protected] ------If you agree to participate in this research study, please sign below, tear off this section and return it to me. You can keep the section above.

______Name

______Signature and date ____I agree to allow the interview to be audio recorded ____I do not allow the interview to be audio recorded.

Appendix C: Interview Guide for the Dementia Caregivers

● I understand you provide care for an older family member. Can you tell me who this person is and what kind of care you provide? ● Have you ever heard the word dementia? o If so, can you please tell me what you understand as dementia or the symptoms. o If no, have you ever known an older person who seems very forgetful or confused? What do you think that is caused by? Is there any kind of special care this kind of person needs? ● Kindly explain how you view/make sense of these symptoms (dementia or forgetfulness) exhibited by your relative. ● Do you think older people who are forgetful are viewed in negative ways? How so? Can you give me an example? Has this ever happened to you or the person you care for? o if yes, please tell me more about it. o If no, please tell me why you think so. ● What has taking care of a person with dementia (or whatever word the participant is using) been like for you? ● Can you walk me through a typical day for you when you are providing care? ● Please tell me how you combine caregiving with other responsibilities. ● What are the not-so-helpful/challenges you experience while caring for a person with dementia? For example, preparing meals, getting other chores done, difficulty getting to the clinic, financial issues? ● What do you find to be helpful in caregiving for a person with dementia? ● What in your opinion are the best things about providing care for a person with dementia? ● What in your opinion are the worst things about providing care for a person with dementia? ● What kinds of help from others, if any, do you receive for dementia caregiving? ● Do you seek help from others? For what types of things? o If yes, tell me about the type of assistance you seek for. o If no, please explain, why don’t you?

● What else would you like to share about your experiences as a caregiver for a person with dementia?

Appendix D: Consent Form for the Focus Group Participants

Dear participant,

My name is Candidus Chibuzor Nwakasi, and I am a student at Miami University, Ohio, USA. I am conducting a research to help understand the experiences of women who are caregivers for people with dementia in Nigeria. You are invited to take a part in this study. If you are willing, I will ask you questions in a focus group about your views regarding some of the descriptions relating to dementia caregiving experiences shared by some female dementia caregivers in Nigeria. This focus group will take about 1 hour and it will be done at a location that is convenient for all group members (4 to 5 people). Your participation in this study is completely voluntary. If at any time you do not want to participate in the interview, you can leave.

Although it is unlikely, some of the questions I ask may lead you to feel emotional or uncomfortable. If you get emotional during the interview, we can take a break or stop the focus group. You do not need to answer questions that make you feel uncomfortable, and you can choose to skip any question or stop your participation in the focus group at any time.

The information you share with me will be useful in understanding the experiences of informal dementia caregivers. For taking the time to speak with me, you will be compensated with a $20 gift card or cash. Additionally, I may ask you if I could contact you about any further questions that I may have after the interview. You are free to say yes or no to this request.

For further questions about the study, please contact me at 5135933703 or [email protected] or my advisor Dr. Kate de Medeiros at [email protected] .If

you have questions about consent and your rights as a research participant, please contact the Office for the Advancement of Research and Scholarship at [email protected] ------If you agree to participate in this research study, please sign below, tear off this section and return it to me. You can keep the section above.

______Name ______Signature and date ____I agree to allow the interview to be audio recorded ____I do not allow the interview to be audio recorded.

Appendix E: Focus Group Discussion Interview Guide

I am interested in learning your views about how dementia and dementia caregiving are perceived and experienced in Nigeria. There may be cultural expectations or values that are unique to Nigeria that would be important for me to include in my research. I will therefore be proposing some broad questions but encourage you to provide any information you feel would be important for someone who is not Nigerian to understand.

● How would you define dementia? From whom did you learn this definition (e.g., clinician, friend, family member). ● Can you please share what you understand by dementia and its symptoms? o Some of the female caregivers in the previous interviews felt that dementia was an inevitable part of old age. What do you think? Do you know or have you heard of others who share this view (you don’t have to tell me who that person is)? o Some of the caregivers in the interview described dementia as madness or relating to mental disorder. What do you think about these views? Do you know or have you heard of others who share this view (you don’t have to tell me who that person is)? o Some also think dementia is caused by witchcraft/sorcery while some think it is karma from being evil earlier in life. Is this something you have heard before? Can you share your views about this? ● These questions are related to providing care for a person with dementia. o What, in your opinion, do you think are some of the challenges that people caring for someone with dementia experience? What are some of the joys? o What do you think about providing financial support for a relative who is a dementia caregiver? For example, who, if anyone, should be providing financial support? o Some women said they are caregivers because it is their family obligation as women. Please share what you think about who should be the caregiver. o Kindly explain your views about sharing of caregiving responsibilities by family members. For example, is there a particular person or persons who act as caregivers? Hypothetically, if you could choose anyone to be a caregiver for someone in your family who had dementia, who would you chose and why?

o What role (if any) do you think that one’s faith or religion play in coping with the stress of being a dementia caregiver? ● Let’s talk about some of the likely barriers to dementia caregiving. o Some of the caregivers mentioned that being a caregiver is difficult and expensive. What do you think and why? Can you share any examples? o Some also said that some family members do not share the responsibilities of caregiving. In your opinion, do you think this happens often? If so, for what reason? Do you have any other insight to share about family caregiving responsibilities? ● Other caregiving issues o Some of the caregivers said being a caregiver helps protect the family image and the person with dementia because the symptoms are somewhat shameful. What do you think about these views? o Some of the caregivers said their husbands resented the fact that they were providing care to a parent and neglecting their duties at home. What do you think about this? o Some people have said that they have been isolated because of the stigma associated with dementia. What are your views on this? o Some say there is reward or blessing from helping their older parents while some say they do it out of love. Kindly tell me what you think about their views.

Is there anything I haven’t asked that you feel is important for me to know regarding dementia caregiving in Nigeria?

Appendix F: Demographic Information

(Filled in by researcher based on oral answers of interviewees)

Age: ______years

Gender - Male or Female

Marital Status o Single o Married o Divorced/Separated o Widow

Highest Level of Education: o Bachelor’s Degree o Master’s Degree o Doctoral Degree o Vocational Course – Please specify______o Other – Please specify ______

Occupation – Please specify ______

Resides with person with dementia o Yes o No o Other – Please specify ______

Appendix G: Institutional Review Board Approval Letters

Appendix H: Research Setting Map of Nigeria Showing the Location of Anambra state

Source: https://journals.plos.org/plosone/article/figure?id=10.1371/journal.pone.0206499.g001 Map Showing Nnewi City, where the Hospital Used for Recruitment is Located

Source: https://aoav.org.uk/wp-content/uploads/2013/12/Screen-Shot-2013-12-12-at- 02.37.25.png