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Predictors of Perceived Social Support for Patients with Dementia: a Mixed-Methods Study

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Predictors of Perceived Social Support for Patients with Dementia: a Mixed-Methods Study Clinical Interventions in Aging Dovepress open access to scientific and medical research Open Access Full Text Article ORIGINAL RESEARCH Predictors of Perceived Social Support for Patients with Dementia: A Mixed-Methods Study This article was published in the following Dove Press journal: Clinical Interventions in Aging Siyuan Yang 1 Purpose: Perceived social support (PSS) is closely linked to health outcomes in dementia Yunmei Zhang 2 patients. However, its continuous benefits are unclear. This mixed-methods study examined Shiqi Xie2 the impact of social support perceptions and differentiation among patients and carers during Yanhan Chen2 disease progression. Dengbi Jiang3 Patients and Methods: Persons with dementia (PWDs), family caregivers, and community family physicians were recruited from nine community health centers. Semi-structured Yetao Luo 4 interviews conducted with 12 PWDs (7 PWDs in mild dementia and 5 in moderate demen- Qinghua Zhao1 2 tia), 12 family caregivers, and 6 community family physicians and conventional content Bing Yang analysis were used to explore social support perspectives at different dementia stages. A total 1Nursing Department, The First Affiliated of 470 PWDs were divided into mild (n=224), moderate (n=190), and severe (n=56) groups. Hospital of Chongqing Medical University, Demographic, physical, and psychological factors related to PSS were examined by the Chongqing, Yuzhong District, People’s Republic of China; 2School of Nursing, group using multiple regression analysis. The group-based characteristics were entered into Chongqing Medical University, three prediction models. Chongqing, Yuzhong District, People’s Results: In the qualitative study, three themes of social support were identified: two view- Republic of China; 3Community Health Center of Daxigou, Chongqing, Yuzhong points refer to social support; different needs and preferences in each stage; non-personalized District, People’s Republic of China; support services. Quantitatively, the mild group scored lowest in perceived social support, 4 Department of Biostatistics, School of χ2 Public Health and Management, while the severe group scored highest ( =64.70, P<0.001). The mild group PSS was Chongqing Medical University, predicted by depression (β=−0.07, P=0.04), cognitive capacity (β=−0.18, P<0.001), and ’ Chongqing, Yuzhong District, People s instrumental ability (β=−0.78, P<0.001), which differed from the moderate and severe Republic of China groups. Conclusion: This study provided comprehensive insight into PSS from PWDs’ perspective at different stages of the disease. Results indicated the need for a stratified care approach and direction for further research on intervention. Keywords: dementia, illness stages, perceived social support, psychosocial status Introduction Worldwide, over 47 million people currently living with dementia, 96% of whom live at home.1 Notably, China ranks first in the number of patients with dementia (PWDs), accounting for 40% in the Asia-Pacific region and 25% globally.2 PWDs are affected by irreversible and progressive cognitive deterioration, which not only affects their ability to perform daily activities, causes distress, and increases financial burdens, but also places a substantial demand on the social support system.3 In 2017, the World Health Organization established social support as Correspondence: Bing Yang; Qinghua a focal item in its Global Action Plan as a public-health response to dementia Zhao and further appealed that PWDs receive better benefits.4 Recent studies have also Email [email protected]; [email protected] demonstrated that adequate social support is strongly associated with both submit your manuscript | www.dovepress.com Clinical Interventions in Aging 2020:15 595–607 595 DovePress © 2020 Yang et al. This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php – http://doi.org/10.2147/CIA.S249223 and incorporate the Creative Commons Attribution Non Commercial (unported, v3.0) License (http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms (https://www.dovepress.com/terms.php). Yang et al Dovepress psychosocial and general wellbeing among dementia patient self-reporting. Notably, previous studies have patients.5,6 However, few have directly investigated shown that PWDs, including those in the late stages of whether effective social support interventions are applied dementia (MMSE score≥4), can share and exchange ideas, in China. needs, and preferences in meaningful ways and respond to Several studies have concluded that social support can questionnaire investigations,31 providing interaction more be subdivided into two main components: structural sup- likely to improve distress. Regardless, the “one-size-fits- port and functional support (also referred to as perceived all” approach does not address the specific needs of support).7,8 Perceived social support is most reliably asso- dementia patients. We do not currently know how per- ciated with psychosocial and cognitive function. In this ceived social support differs throughout the dementia context, PWDs typically living with decreased psychoso- stages or what predictors are associated with specific cial status, which leads to apathy, depression, and areas of patient concern. – anxiety.9 11 The perceived social support framework The perceptions and predictors of social support are further outlines the characteristics of patient health needs also influenced by PWD’s and family’s culture, health care according to four dimensions—information, esteem, social systems, and insurance.32 For example, dementia is not 12,13 companionship, and instrumental support —all of included in the government-subsidized community health which can help patients better cope with stress and the service (CHS) package (eg, hypertension and diabetes), 14 impact of the disease’s physiological processes. Based and currently, there is few public health care program 12 on research by Cohen and Wills, the Interpersonal specifically for dementia in China.33 For dementia family, Support Evaluation List (ISEL) is a useful measure of extra resources are still belonging to paid services. perceived social support corresponding to the four Moreover, lack of professionals to engage in dementia- domains of patient health needs and identifies unmet specific caring (eg, occupational therapist) is a major bar- 15–17 needs among people with chronic diseases. The rier to achieve dementia management in CHS in China.34 ISEL successfully compared levels of perceived social This study conducted both qualitative and quantitative support among people with and without dementia in the analyses to examine stage-related differences in perceived 18 United States. Despite an increasing body of research social support among dementia patients by testing two evaluating social support to provide more effective PWDS hypotheses: (1) there are stage-related differences in per- 19,20 interventions, there is limited awareness of this issue ceived social support among PWDs’ perspectives; and (2) 21 in Chinese society. Therefore, we proposed that the ISEL there are stage-related predictors of perceived social sup- would aid Chinese health providers, allowing them to port among PWDs. fi more ef ciently allocate resources among PWDs. To the best of our knowledge, this study is the first Previous research has shown that western Chinese care analysis of stage-related differences in perceived social providers often do not implement the types and amounts of support among dementia patients in China. We, therefore, 22 support required by PWDs, regardless of stage and expected that qualitative interviews were performed to help 23 type. Unfortunately, elderly persons with chronic dis- identify whether any differences, based on stage, exist eases are often provided with standardized support sys- among PWDs in relation to PSS and what reasons do fi tems, which may not be properly tailored to their speci c PWDs experiences of differentiated PSS. Further, 24 conditions. Further, few studies on home-based social a quantitative study was conducted to determine can these support have focused on dementia patients. This poses an predictors explained such stage-related differences in PSS. important question: does the “one-size-fits-all” approach meet the needs of PWDs and their family members throughout the disease duration? Previous studies have Materials and Methods indicated that patients’ perceived social support changes Design as their diseases progress.25,26 Consequently, several pre- We conducted qualitative and quantitative research among dictors may also lead to different perceptions, including PWDs, their family carers, and community family physi- age,27 income,28 changing healthcare climates, negative cians from nine districts in Chongqing City. Family carers effects,29 patient service preferences.30 While many pre- were contacted first by official accounts on WeChat, pos- dictors have thus been reported, most data were retrieved ters, mailings, and word of mouth to explain the project through clinician and caregiver measurements rather than and determine interest, and participants were recruited 596 submit your manuscript | www.dovepress.com
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