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The interface between and mental

An evidence review

i POLICY PAPER 2016 RESEARCH Suggested citation:

Regan, M. (2016) The interface between dementia and : an evidence review. : Mental Health Foundation.

This paper was prepared by:

This report was prepared by Marguerite Regan, Policy Manager for the Mental Health Foundation, for the Mental Health Providers Forum.

The Mental Health Foundation is deeply grateful to the stakeholders contacted who agreed to be interviewed and shared resources, in particular David Truswell from Dementia Alliance for , Kathryn Penrith from Making Space, Scott Vigurs from Mental Health concern, James Cross from Skills for Care, Sonia Mangan from Croftlands and members of the DH dementia team, Leeds.

We are also thankful to the staff who contributed, especially Toby Williamson and Dr. Iris Elliott for guidance as topic experts and peer reviewing, Josefien Breedvelt for peer reviewing and Linda Lao and Millie Macdonald for proofreading and design support.

The Mental Health Provider Forum leads a strategic collaboration of “not for profit Mental Health organisations” including: The Centre for Mental Health, The Mental Health Foundation, , Rethink Mental Illness and NSUN.

Together with 21 other “not for profit partners”, they link strategically with t he Department of Health, NHS England and England undertaking specific agreed work programmes aimed at benefiting the strategic development of the “not for profit mental health sector”.

Published in collaboration with:

ii Contents

Executive summary 1 Introduction 4 Methodology 4 Terminology 4 Distinguishing between mild cognitive impairment, dementia and mental health problems 5 Mild cognitive impairment 6 Mental health and mental health problems 6 Dementia 7 of dementia and mental health problems 9 Dementia and 9 Dementia and 10 Dementia and 10 Dementia and 10 Dementia and 11 Profiling the population living with dementia and mental health problems 11 Prevention 12 Policy context 14 Cross-cutting policy related to both dementia and mental health 14 Mental Health policy 15 National Institute for Health and Care Excellence guidance related to mental health 15 Dementia policy 16 Prime Ministers Challenge 16 National Institute for Health and Care Excellence guidance related to dementia 16 A rights based approach to dementia and mental health problems in policy and practice 17 Identification of dementia and mental health problems 18 Current research and evidence base 18 Mental health problems 18 Dementia 19 Identification of a mental health/dementia comorbidity 19 Identification of early onset dementia and mental health problems 20

iii The economic and social cost 21 Care and services provision for dementia and mental health problems 22 Care at home and informal care 22 Care in and homes 23 Care and service provision by the third sector 25 Services for those living with early onset dementia and mental health problems 25 Support for mental health problems in people living with dementia 26 Gaps and resources identified 28 Conclusions and recommendations 29 Annex 1: Methodology 31 Peer reviewed published literature 31 Step 1: Search in the NHS Knowledge Network 32 Step 2: Exclusion 33 Grey literature 34 Step 2: Google search 34 Step 3: Exclusion 34 Interview questionnaire 35 Annex 2: Sub-types of Dementia 37 Annex 3: Definitions of mental health problems 39 References 40

iv Executive summary

While there has been considerable and welcome in the area of dementia over recent years, the mental health of people in later life, and specifically the complex relationship between dementia and mental health problems, is a neglected area in public discourse, policy and service provision. In this paper we explore the relationship between dementia, mental health and mental health problems.

To do this, an evidence review was carried out to explore the extent that people living with dementia have co-existing mental health problems. The review initially examined the limited available literature on the incidence and experiences of comorbidity of dementia and mental health problems. Several interviews were then undertaken to get a clearer idea of the real world experiences of those working with people living with dementia and mental health problems, to help fill some of the current gaps in literature on comorbidity.

It begins with a section discussing the similarities and differences between dementia, cognitive impairment and mental health problems, followed by a section on the identification issues. We then discuss the current policy in relation to mental health and dementia, and the social and economic costs associated with both. Care, service provision and treatment methods identified through the review are then discussed, followed by gaps and resources. The review ends with some recommendations based on the findings of the review.

The main finding of this review is that are underdiagnosed in people living with dementia, not extensively researched and therefore not understood fully. The relationship between dementia and mental health problems is not well documented, and extensive searching found relatively little literature on the challenges or experiences associated with living with this co-morbidity. There was also an overwhelming lack

1 of literature on the care needs of those with dementia who develop a mental health problem or for those with a pre-existing mental health problem with develop dementia. This translates into a lack of understanding within service provision and an absence of specialised services for people living with both mental health problems and dementia, which was confirmed through the interviews with people working as service providers.

Based on our review of the available information, we have produced the following recommendations:

Policy level • Co-produce a mental health and dementia research programme with people with lived experience of this co-morbidity, their families and carers. • Develop data systems to ensure mental health and dementia data can be analysed in an integrated and strategic manner to inform provision, policy and research. • Develop policy and practice guidance on the mental health needs of people living with dementia.

Organisation level • Develop relationships between mental health and dementia representative organisations and the wider movement; and advocate for the inclusion of people living with mental health problems and dementia within the UN review of the UK’s compliance with the Convention on the Rights of Persons with Dementia. • Develop a rights based approach to health and social care provision for people living with mental health problems and dementia, and their families and carers.

Programme level • Develop a programme to pilot social inclusion and community based interventions, and to scale and test promising approaches. • Develop programmes of provision, guidance, policy and research for people with early onset dementia; and scale and test promising approaches.

1 2 Cross-cutting • Ensure that co-production principles and approaches are adopted across all provision, policy, research developments and resource the work of representative organisations such as the Dementia Engagement and Empowerment Project and the Dementia Alliance for Culture. • Develop programmes of provision, guidance, policy and research for members of BAME communities; and scale and test promising approaches.

2 3 Introduction

The population of the UK is , with Methodology the average age of the population on The Mental Health Foundation is an the rise and the number of older people independent UK charity working across increasing, due in part to ageing of large both dementia and mental health. This cohorts born after both World Wars and review has been undertaken to identify: the ‘baby boomer’ generation of the what is known about people living with 1960s. The UKs population over the dementia and mental health problems, age of 50 makes up over a third of the what policy exists in relation to this population, with latest statistics putting comorbidity, and what services and it at 23.2 million.1 The number of people resources exist for those working with aged 75 and over has increased by 89% people living with a comorbidity of since 1974. dementia and mental health problems. The review gathered evidence from a An ageing population presents new selective literature review and interviews. health challenges for the health and Annex 1 contains the full methodology social care systems to manage. One such followed for this evidence review. challenge is the increasing number of people living with dementia, including Terminology the sometimes forgotten proportion Later life is broadly defined as starting of people who develop early onset at 50 years for this report. While we dementia. Another is the number of recognise that most do not -define as older people living with mental health ‘older people’ at this stage in their lives, problems. A third, but often overlooked many people will begin to experience a challenge is the population of people physical decline or deterioration in their living with a comorbidity of both 50s, many begin to seriously plan for dementia and poor mental health. their retirement, take early retirement or find it difficult to secure employment. Although there has been considerable Those in who face inequalities and welcome attention in the area of such as and poor mental and dementia in recent years, mental health physical health are also more likely to in later life is a neglected policy brief. As experience the effects of ageing earlier a result the prevalence of comorbidity in their life course, and a later definition has receive little of the attention it does not recognise and accommodate deserves, both in the general population these factors.2 and in marginalised communities. The aim of this report is to provide Although there are variations on how a comprehensive, equity focused the term ‘comorbidity’ can be used, it is review, that equips those working in defined here as two or more conditions or interested in dementia, later life (physical, mental or neurological) and and mental health problems with a recognises the possibility of interactions clear understanding of the relationship and competing risks between conditions between dementia and mental health.

43 meaning that comorbid conditions and intersectionality need to be and their treatments can have effects accounted for when addressing the greater than the sum of the individual needs of those living with either, or conditions.3 with both. • It is widely recognized that both There are concerns and objections to people living with dementia and the various terms used to describe poor people with mental health problems mental health on the grounds that they are frequently denied their human medicalise ways of thinking and feeling rights, despite legislation in place and do not acknowledge the many to protect their rights.4, 5 For this factors that can prevent people from reason, these is a shift towards reaching their potential. We recognise addressing dementia and mental these concerns and the stigma attached health problems through a human- to mental ill health, mental illness rights based approach and locating and others. However, as there is no people’s experiences within the universally acceptable terminology that broader disability movement, to we can use as an alternative, we have reinforce the obligations of all to chosen to use ‘mental health problems’ protect the rights of people living through this report. with dementia and mental health problems. Distinguishing between • Both dementia and mental health mild cognitive impairment, problems have traditionally dementia and mental health been viewed from a medicalised problems treatment model, but there is growing evidence that prevention is There are advantages and disadvantages possible by addressing risk factors to the separating out of dementia, and wider determinants of health. cognitive impairment and mental • Historically, both dementia and health problems, given the overlaps in mental health have been treated symptoms and the marked similarities within psychiatric services because between the experiences of people they are conditions which living with dementia and people living the (unlike other neurological mental health problems. A number of conditions). historical and contextual factor impact the experiences of people living with The relationship between all forms of dementia, cognitive impairment and dementia, mild cognitive impairment mental health problems. (MCI) and mental health problems is complex. Some symptoms of dementia • Dementia and mental health and depression for instance- including problems occur in all populations, withdrawal from social activities and but the prevalence and impacts general - are very similar. The of these conditions vary due to forgetfulness experienced during mild differential access to information cognitive impairment and early stage and support; therefore, diversity

3 54 Alzheimer’s (the most common relationships and resilience. Mental form of dementia) are easily confused. wellbeing in later life enhances people’s This can sometimes lead to misdiagnosis. functionality and adds life to their years, Two conditions can be present as well as years to their lives.7 concurrently, which can also complicate identification. It is important to highlight Mental health problemsi is an MCI as a stand-alone condition from overarching term which covers the dementia and mental health problems, range of negative mental health states and below we distinguish between the including, – those three terms, but moving forward this mental health problems meeting the literature review will focus on dementia criteria for psychiatric diagnosis, and and mental health problems only. mental health problems which fall short of a diagnostic criteria threshold. Mild cognitive impairment Mental health problems can be MCI is a clinical diagnosis used for a further categorised into the common condition in which someone has minor mental problems such as anxiety and problems with their mental abilities, such depression which may be transient as , attention or that (relapsing, remitting and recovered); are worse than normally experienced and severe mental health problems such by a healthy person of that age, but the as schizophrenia and bipolar disorder; symptoms do not interfere significantly and the various behavioural disorders. with daily life. There is no test or Three quarters of people with a mental procedure to demonstrate conclusively health problem do not receive ongoing that a person has MCI. For some people treatment.8 it’s a precondition for Alzheimer’s, although it doesn’t proceed in all forms Mental health in later life is shaped by of dementia, seen less in the forms of the experiences lived through to this dementia that develop suddenly, such point, the social, economic and physical as dementia. For others it’s a environments in which people live treatable condition, caused by physical and is influenced by pressure points health problems, poor eyesight, vitamin and experiences such as retirement, deficiency or as a side effect of certain bereavement or a deterioration of .6 physical health.9 Identifying and treating older people’s mental health problems, Mental health and mental health rather than incorrectly assuming they problems are part of the natural process of ageing, Mental health is more than an absence is an issue that needs to be addressed. of symptoms of distress, it includes a Annex 3 contains full definitions of the positive experience of self, individual mental health problems referred to in resources included self-esteem this paper. and optimism, the ability to sustain i Psychological disability is a term being used increasingly to describe a spectrum of mental health problems that influence our , , and/or behaviors, used when the problems significantly interfere with the perform of life activities such as , working and communicating. We acknowledge its but will for ease of understanding will use mental health problems throughout the report.

65 Dementia Early onset dementia is the term used Dementia is an umbrella term which for any dementia diagnosis received defines organic disorders or before the age of 65. There are an where changes to the physical structure estimated 40,000 young people of the brain is the cause of the illness, with dementia across the UK.10 Sub- including the death of brain cells or typing dementia is important in guiding damage in parts of the brain that deal treatment and prescription decisions. with processes. This leads to a Alzheimer’s disease, the most common decline in mental ability which affects form of dementia making up 60% of memory, thinking, problem-solving, cases, is degenerative, and its exact concentration and . Each causes are unknown. Annex 2 contains person’s experience with dementia is an outline of the sub-types. unique.

5 76 Table 1 highlights some of the main characteristics and statistics around dementia, mild cognitive impairment and mental health problems.

Table 1: Dementia, mild cognitive impairment and mental health problems

Dementia Mild cognitive impairment Mental Health problems Age is the key known Between 5-20% of people aged Depression is the most risk factor for dementia- over 65 have MCI. common mental health although between 2-10% problem in later life, of cases start before the There are numerous causes for affecting 20% of older age of 65 years. After MCI, from depression and anxiety people in the general 65 years the prevalence to physical illness, deficiencies or community, and up to 40% doubles every five years. of medication. of older people in care homes. Symptoms include short- For some, MCI is a pre-dementia term memory with recall condition, with the brain Its estimated that 85% and progressive loss that causes dementia already of older people with of functional abilities established. depression receive no help including , at all from the NHS. recognition and sequenced Not all cases of MCI leads to action. the development of dementia, Studies of depressed adults but people who have MCI are at show they have poorer There are approximately an increased risk of developing functioning, comparable 850,000 people with dementia (10-15%). to or worse than that dementia in the UK- of people with chronic 40,000 of which are Almost all cases of Alzheimer’s medical conditions such as younger people.11 start with MCI. heart disease and arthritis.

There are approximately A healthy lifestyle can lower The percentage of older 60,000 deaths each year the risk of a person with MCI people aged 50 and above directly attributable to developing dementia. who reported feeling dementia. anxious or depressed MCI often occurs alongside ranged from 14-22%. Approximately 50% depression but it’s unclear what of people living with the relationship between them People experiencing severe dementia in England is.13 mental health problems and Wales will receive a die on average 15-20 years diagnosis. There is a grey area between MCI earlier than the rest of the and early onset Alzheimer’s as population. On average people live currently available testing make for 6 years after being them difficult to distinguish. diagnosed with dementia.12

6 8 Comorbidity of dementia and but is most common with vascular 17 mental health problems dementia. It is unclear whether specific subtypes of depression correspond to specific types of dementia. Dementia and mental health problems are not mutually exclusive, and there There are a body of longitudinal studies, is a subset of the English population examining whether depression was a living with both. This group consists of risk factor for the onset of dementia people living with existing mental health which have found that depression problems who develop dementia, and was a major risk factor for incidence people living with dementia who develop of dementia including Alzheimer’s mental health problems. disease, and mild cognitive impairment.18, 19, 20, 21, 22 A 2013 The exact size of this group is unknown, systematic review and meta-analysis as recording is difficult for various of 23 community-based cohort studies reasonsi , but small scale studies, given undertaken to evaluate the risk of the prevalence levels of dementia and incident of dementia in people with mental health problems in later life, it late-life depression found depression is reasonable to estimate there are a was associated with an increased risk significant number of people living with of dementia, and suggested that it dementia who are also experiencing a would be valuable to design clinical mental health problem. Demographic trials to investigate the effect of late- and social factors are important to life depression prevention on risk of keep in mind also, as the experiences of dementia.23 dementia and mental health problems vary across populations in England. Depression in earlier life increases Below is a summary of the available the risk of dementia in later life by research on comorbidity of dementia approximately twofold.24 A large and specific mental health conditions. Danish study has found that the rate

of a subsequent diagnosis of dementia Dementia and depression was significantly correlated with the The relationship between dementia number of prior depressive episodes and depression is complicated because with, on average, the rate of dementia some of the expressions of dementia increasing by 13% with every depressive and depression overlap and the episode that led to an inpatient and mechanisms are admission.25 Some recent studies have unclear.14 A systematic study from 2010 suggested that long-term treatment found that in there was a definite with anti- may increase association between depression and the risk of developing some types of dementia.15 One study estimated that dementia.26 Further studies are required 40% of people with dementia are also to determine the impact of depression experiencing depression.16 Depression treatment on dementia progression.27 can occur with all forms of dementia i There are growing bodies of evidence around both the costs of poor mental health and dementia for society and (for mental health primarily) the case for investment in prevention .

97 Depression in older people can often consists of at least two types: (1) those go undiagnosed despite the prevalence experiencing a late-life manic episode of risk factors including bereavement, whose bipolar illness began in young loneliness and deteriorating physical adult life; and (2) without any health. On occasion someone manic episodes before late life but may experiencing depression may be only have a history of depression.32 Late misdiagnosed as having dementia. onset bipolar disorder may be caused by Individuals dealing with both will be dementia.33 struggling with two sets of difficulties and may be more confused and have It can be hard to identify bipolar disorder greater memory loss. The double in people living with dementia. The two experience may also result in more conditions demonstrate similarities extreme behaviour and or aggressive with respect to their clinical expression reactions. This can compound isolation, (agitation, psychotic, and disempowerment as well as cognitive cognitive symptoms) and structural brain decline. .34, 35, 36 However there are important differences, with cognitive Dementia and anxiety symptoms prevailing in dementia and Anxiety is more common in individuals mood symptoms in bipolar disorder, a with dementia that those without. lack of brain structural abnormalities in Defining anxiety in people living bipolar that are seen in dementia, and with dementia is complicated due to both presenting different abnormalities the overlap in symptoms of anxiety, in functional brain neuroimaging.37 More depression and dementia. The specific tests are needed to improve prevalence of people with dementia diagnosis.38 experiencing anxiety disorders has formed the basis of several recent Dementia and Schizophrenia studies and results range from 5% Early studies of the progression of to 21%.28, 29 Anxiety may be higher in dementia over the lifespan in people vascular dementia than in Alzheimer’s living with schizophrenia showed Disease, and it decreases in the severe inconsistent results.39 However, there stage of dementia. It is associated is a growing body of evidence showing with poor , behavioral that people with schizophrenia are at an disturbances and limitations in activities increased risk of developing dementia, of daily living.30 In the later stages of with one study reporting the rate of dementia chemical changes in the brain dementia at twice that of people who may increase bouts of anxiety and did not have a diagnosis of schizophrenia depression.31 40 although the most common type of dementia in people living with Dementia and bipolar disorder schizophrenia differs from Alzheimer’s in About 90% of cases of bipolar disorder its clinical features.41, 42 have a reported onset prior to the age of 50. Elderly people living with The diagnosis and management of bipolar are heterogeneous and general dementia in schizophrenia is challenging.

7 108 Cognitive impairment and are and conditions that influence their common features of schizophrenia, development- although this is changing present in more than 80% of older slowly for both. The prevalence of people with schizophrenia.43 Because of dementia and mental health problems this, some have argued that it may not differs across gender, age groups and always warrant an additional diagnosis population groups, so although there of dementia, but studies have shown was no literature found which dealt dementia is a real entity in people with with intersectionality in relation to a schizophrenia.44 comorbid experience of dementia and mental health problems, it’s probably Dementia and psychosis accurate to assume these factors Psychosis is common in older people, influence the prevalence rates. with 20% of people over 65 developing psychotic symptoms by age 85.45 Often Intersectionality is a concept that but not always, psychosis develops in seeks to explore how social locations people living with dementia as a feature and identities converge to create of the progression of the disorder and conditions of inequality and privilege, can be expressed through, , acknowledging that we cannot usefully , , apathy and understand individuals in terms of disturbance. The prevalence single identity categories as everyone of psychotic symptoms in patients occupies multiple social locations that with Alzheimer’s disease is 41.1%.46 intersect to give more or less social These behaviours can be particularly capital and privilege.48 A significant distressing for both the individual and body of work by Dr. Wendy Hulko over their carer’s and may result in a break the last decade has helped to highlight down in family structures when family the heterogeneous nature of people members feel unable to provide the living with dementia and to challenge necessary support. It was unclear from prevailing ideas of what it is like to live the literature reviewed what number with the condition.49, 50 The Marmot of people with psychosis go on to Review investigated the intersectional develop dementia. People from African relationships between mental health, American or black ethnicity groups other social identities and inequalities.51 have been found to have a higher rate of psychosis. Psychosis is also associated Here are some of those intersecting with more rapid cognitive decline.47 factors:

Profiling the population living Gender: Dementia is an issue that with dementia and mental disproportionately affects women, with two-thirds of people living with health problems dementia in the UK being women,52 and three quarters of carers for people with Dementia and mental health problems dementia being women.53 This is partially are conceptualised primarily as cognitive explained by the fact that women and psychological issues, with little outlive men on average. However, there attention given to the wider factors

119 is a limited body of research literature they experiences can both be negatively concerned with gender and dementia, affected.63 suggesting that dementia is a category not marked by gender.54 In relation People from a disadvantaged to the prevalence of mental health background: Socio-economic problems across genders, women are circumstances, education levels and more likely to experience anxiety or adverse childhood experiences may all depression. play a part in the genesis of conditions that lead to dementia.64, 65, 66 Traumatic Black and Ethnic Minority communities: events and adverse experiences, poor The Irish population in England have housing or , or having the highest estimated prevalence multiple and complex needs place of dementia of any ,55 people at higher risk of experiencing due in part to the older mean age of mental health problems. this community. The black African- Caribbean population experience more Prevention prevalence of early onset dementia and have greater risk factors for vascular Until relatively recently it was thought 56, 57 dementia and also twice as likely that was not to experience psychotic disorders possible. However, there is emerging compared with their White British evidence that physical health plays 58 counterparts. a significant role in the development of mental health problems and some People with learning : It is cares of dementia. Emerging research estimated that 1 in 5 people with learning has shown that keeping vascular risk disabilities will develop dementia and factors under control can prevent a 1 in 50 people with Down’s proportion of new cases of dementia, 59 will develop dementia in their 30s. as and A 2007 study in the UK found that are risk factors for the development 54% of people with learning disabilities of mild cognitive impairment, as well 60 had a mental health problem. The as Alzheimer’s disease and vascular assessment of cognitive impairment in dementia.67, 68, 69 people with learning disabilities needs special care, paying attention particularly Lifestyle changes, such as a healthy diet to existing mental health problems, and and regular exercise can help reduce 61, 62 less reliance on standard tests. the risk of and ,70 as well as having a positive impact on People with long-term physical mental wellbeing. These changes can health conditions: People with long- be supported through population wide term physical health conditions have policies targeting in food, smoking higher prevalence of mental health and consumption. It has been problems and in the case of older estimated that if it was possible to delay people, dementia. These co-morbid the onset of dementia by as little as 1 problems, the prognosis for their long- year, that would reduce the prevalence term condition and the quality of life

9 1012 of dementia by 12 million fewer cases In terms of preventing mental health worldwide in 2050.71 problems in people living with dementia, research on care homes has shown that The NHS Health Check programme those that met the residents physical offers advice and support to help health needs effectively had lower rates people aged 40-74 make changes of depression.76 A 2014 survey in the UK that can reduce the risk of dementia.72 on people with dementia found that less Unfortunately, the programme does not than half felt part of their community, currently extend into addressing mental and nearly 10% had left the house health problems. There is a clear need to only once a month,77 this is a worrying increase knowledge of the risk factors statistics as loneliness and isolation are associated with vascular dementia and linked to poor mental health.78 However, how positive lifestyle changes can make this is an area requiring more research a difference, through public awareness to explore mechanisms and causation as raising and establishing dementia well as measures to implement. friendly communities.73

Dementia friendly communities

Dementia friendly communities is a movement developing across Europe, and has been shown to be an effective way to improve awareness of dementia and reduce the stigma and discrimination experienced. It is a key part of the Prime Ministers Challenge. In 2012 a nationwide campaign was run to improve understanding.

Public Health England and the Alzheimer’s Society then launched Dementia Friends, a major aimed at improving understanding of dementia and changing attitudes toward people with the condition. Their aim was to get communities across England signed up to the foundation-stage recognition process, and to develop a publically available specification for dementia friendly communities.74

However, the current communities in existence do not explicitly address co- existing mental health problems, although this may change in the future.75

13 Policy context

Dementia is now the responsibility of the and under the UN Universal Periodic Parliamentary Under-Secretary of State Review process. of Public Health, currently Jane Ellison MP. Mental Health is held by the Minister The Equality Act (2010) of State for Community and Social Care, People living with mid-late stage currently Alistair Burt MP. dementia or long-term mental health problems are covered by the full People with dementia or mental health protection of this Act, due to the problems have the same rights as substantial and long-term negative everyone else under the Human Rights effect on their ability to do “normal daily Act and European Convention on activities” meaning they are covered Human Rights. However, for various under the definition of disability. This reasons, extra protection mechanisms includes protection from all forms of exist within policy and legislation for discrimination that are unlawful based those living with dementia and mental on their disability. From an intersectional health problems to ensure their rights perspective, the Act can also be used are protected and their needs are met. to ensure that culturally appropriate support and care be provided to people Cross-cutting policy related to both living with dementia or mental health dementia and mental health problems. In 2015 a Select Committee undertook a review of the impact of United Nationals Convention on the the Equality Act on people living with Rights of People with Disabilities a disability. It recommended that the The Convention on the Rights of Government make a commitment to Persons with Disabilities (CRPD) is give due consideration to the provisions an international treaty, ratified by the of the UN convention on the Rights UK in 2009, which promotes and of Persons with Disabilities when protects the rights of the person with formulating new policy and legislation a disability. The Convention defines which may have an impact on people disability as including “those who have living with disability.79 long-term physical, mental, intellectual or sensory impairments in interaction The Mental Act (England & with various barriers may hinder their Wales only) full and effective participation in society The Mental Capacity Act 2005 on an equal basis with others”, which introduced protections for people with means that people living with dementia dementia or certain mental health and mental health problems should be problems, to ensure they have the afforded the protections available under ability to make decisions for themselves it. The UK’s compliance will be reviewed where possible and to protect their in 2017 by the UN Disability Committee rights in instances where decisions are

14 being made for them when they lack Age inclusive mental health series have capacity. It is seen as an empowering been developed because age thresholds piece of legislation that supports the were discriminatory under the Equality rights of people to make decisions for Act 2010, which makes it illegal to themselves whenever possible, although discriminate on the grounds of age in it has sometimes been used in ways that the provision of services including health reinforce overly protective risk-averse and social care services. However, one that undermine autonomous concern that has arisen from this move decision making and self-determination.80 is that there are particular aspects Questions have been raised about the of mental health in later life which Act’s compliance with CRPD.81 require specialist services, including the complexity of a mental health/dementia The Care Act (England only) comorbidity for example, and this focus The Care Act 2014 brings together and expertise is being lost as services existing local authority responsibilities become more age inclusive. for providing social care into a single piece of legislation, as well as some National Institute for Health new responsibilities. The legislation and Care Excellence guidance is concerned with personal dignity, protection from , control by the related to mental health individual over their day-to-day life, physical health, mental health and The National Institute for Clinical emotional wellbeing, and the individual’s Excellence in England has produced contribution to society. The Care Act several relevant publications including obliges local authorities to enable the public health guidance on mental individual to participate as fully as wellbeing and older people and on possible in decisions about them. promoting the independence and mental wellbeing of older people: Mental Health policy NICE (2015) : delivering There is currently no specific policy for personal care and practical support to mental health in later life in England. older people living in their own homes The Department of Health’s National [NG21] Framework for Older People included a chapter on mental health, with a section NICE (2015) Older people with social on Dementia, but this came to an end in care needs and multiple long-term 2011.82 No Health without Mental Health, conditions (NG22) the 2011 cross-government strategy is age inclusive and specifically seeks NICE (2015) Older people: to improve mental health outcomes independence and mental wellbeing for people across all age groups.83 The (NG32) Mental Health Taskforce did not include dementia in its five year forward view for NICE (2016) Community engagement: mental health due to the work already improving health and wellbeing and being done on dementia through the reducing health inequalities (NG44) Prime Ministers Challenge, resulting in no comorbidity recommendations being developed.84

15 Dementia policy the links between dementia and other In 2009, The Department of Health programmes of work is key, particularly launched the first National Dementia those focused on mental health’ (p36). Strategy for England, proposed to For people living with dementia and support people diagnosed with dementia their carers affected by depression or and their carers to ‘live well’ with loneliness the IAPT programme plays dementia, to raise public awareness of a key role and increasing access will dementia, reduce stigma and facilitate be key focus over the coming years. early diagnosis.85 This was done on the It also recommends that older people back of a report by Alzheimers Society with dementia who are admitted to and Mental Health Foundation that should have access to specialist highlighted the stigma experienced by mental health liaison services, including people living with dementia.86 There expertise in of older adults, as are clear gaps in the current dementia part of their package of care.88 strategy in terms of supporting mental health needs. The National Dementia Action Alliance, formed of national and local Prime Ministers Challenge organizations with an commitment to In 2012, the Prime Minister’s ‘challenge’ transforming the lives of people with on dementia was announced, stating that dementia and their carers, is a key part ‘we must ensure that every person gets of dementia policy implementation in the treatment and support which meets England, shaping policy and attitudes at their needs and their life’.87 The challenge a national level.89 superceded the national dementia strategy. The main focus of the challenge National Institute for Health are to improve diagnosis, provide better and Care Excellence guidance support for carers, develop dementia related to dementia friendly communities and improve research-primarily into find a . The NICE have published the following only mention of mental health with the dementia related guidance: policy document is in relation to key areas highlighted for improvement in NICE (2006) Dementia: supporting relation to care in hospitals and care people with dementia and their carers in homes, stating that ‘aspects of variable health and social care (CG42) or poor care regarding how the care met people’s mental health, and NICE (2010) Dementia: support in social needs’ needed to be improved health and social care (QS1) (p32). NICE (2013) Dementia: independence The challenge was updated in 2015 and wellbeing (QS30) with the Prime Minister’s dementia ‘2020 vision’ An implementation plan NICE (2015) Dementia, disability and containing details of how the vision will frailty in later life- mid-life approaches to be met was published in 2016, which delay or prevent onset (NG16) contains a section on mental health and wellbeing. It stages that ‘recognising

16 A human rights based approach human rights based approach into its to dementia and mental health national dementia strategies, practice problems in policy and practice guidance, standards and other relevant Dementia and mental health discourse documents. has historically been dominated by the highly ‘medicalised’ view of disease A human rights based approach can and illness. However, increasingly they be implemented using the ‘PANEL’ are both being viewed as having a principles. PANEL provides a framework rights-based dimension. Although both of the important elements that strategies dementia and long-term mental health and policies should include: problems are considered disabilities • Participation: Dementia and mental under the Equality Act 2010, neither health problems should not exclude are readily recognised as a disability in people from participating in society. current policy and practice terms. • Accountability: Those responsible for protecting the human rights of There are now calls for a practical people living with dementia and and systematic change to take place mental health problems should be to embed a social model of disability, held accountable for any human and viewing dementia and mental rights violations. health problems from the social model • Non-discrimination: Education is perspective has several implications needed to increase understanding for policymakers and service providers. of these conditions to reduce stigma This would progress people living experienced. with dementia and mental health problems being viewed as a legitimate • Empowerment: People living part of mainstream society, living in with dementia and mental health communities as equal citizens with their problems should be empowered recognised (MHF, 2015).90 to participate in decision making processes The most recent policy statement on • Legality: All measures related dementia in England refers to the human to dementia, including policies, rights of people with dementia, but does legislation and systems, adopted so only in relation to older people, which by states or stakeholder should be is an issue for those under the age of 65 linked to the Universal Declaration experiencing early onset dementia (DoH, of Human Rights and other human 2015).91 Scotland has moved ahead of rights instruments. the rest of the UK by incorporating a

17 Identification of dementia and mental health problems

Current research and health problems and dementia evidence base remain under researched, despite acknowledgement that to prevent either those causes and contributing factors Within the UK, England has the strongest need to be identified and understood. mental health data administered through To combat this, the government has Public Health England’s National Mental pledged to increase annual funding of Health Intelligence Network (NMHIN). dementia research to £66 million,92 and The NMHIN manages the mental health, to develop a mental health research and dementia ‘fingertips’ strategy.93 However, it is unclear whether online resource which offers access to either of these will include dedicated data gathered across England at a local research on co-morbidity of dementia level. However, there is a need for more and mental health problems. detailed and better quality data to be collected and shared, as many data sets “…whatever is diagnosed first drives the are not comparable making it difficult to care the person receives”- Interviewee generate comprehensive overviews of from Croftland current relationships and trends. Mental health research received 5.5% of One consequence of the welcome health funding. The Five Year Forward attention increasingly being given to View on Mental Health (the report of the early intervention for mental health is Mental Health Taskforce) recommended that less attention is given to later life the development by 2017 of a ten year interventions. More research is needed in mental health research strategy and a order to understand which interventions five year data development plan. The will work best at preventing and strategy and data development plan will improving the health and lives of people be informed by the European Roadmap who are experiencing (or at risk from) for Mental Health Research in Europe mental health problems and dementia. (ROAMER).94 Measurements of mental health and dementia need to be part of a broader Mental health problems suite of measurements that relate data to the wider determinants of health, There are various valid and reliable taking in the social, economic and screening tools that are useful in environmental factors. detecting mental health problems, but they require training to ensure they The current funding for research into are used efficiently. The Geriatric mental health or dementia does not Depression Scale is a useful tool for reflect the costs of to screening older people for depression, society. The causes of both mental with 30, 15 and 4 item versions

18 available.95 NICE recommend set services have access to liaison mental questions for screening general patients health teams, but this needs to take with a physical health problem.96 an integrated approach to cover both mental health and dementia in later life There is widespread under-treatment to be effective.103 of depression in older persons.97 Left untreated, mental health problems Dementia is often difficult to diagnose can lead to increased mortality, longer in BAME communities, due to hospital stays and institutionalisation, insufficient knowledge within families and reduced and communities, of exclusion and general health, with depression in people with Learning Disabilities due associated with experiencing more to problems and its .98, 99 early onset in the community. Another factors is that most cognitive tests are Dementia developed and standardized in one The diagnosis rate for dementia in ethnic group, which may not transfer England is only 51%- lower than Scotland appropriately to another ethnic group and Northern Ireland. To improve this, due to cultural, education, language and 104 NHS England published a Dementia other factors. toolkit aimed at helping GPs to make more timely diagnosis and offering them Identification of a mental advice on how to provide vital post- health/dementia comorbidity diagnostic support.100 To identify a person with dementia’s There is a dementia Commissiong mental health or wellbeing, previous best for Quality and Innovation (QUIN) practice was by observational or proxy framework, which since its introduction (for example, asking a family member has raised the profile of the condition in who knew the person well) measures.105 general hospitals and is now successful Although these are still useful for people is locating 90% of people with possible living with dementia who find it difficult 101 dementia (DoH, 2012). Given its to communicate, it is now deemed success, there are now plans to develop a more appropriate wherever possible to new CQUIN to improve the recognition have the person with dementia tell you and treatment of depression in older directly about their quality of life, using 102 people to be introduced (NHS, 2016). self-report measures.106 Depression The Mental Health Taskforce has made and anxiety have been found to a recommendation for a new CQUIN directly correlate with a person’s self- that ensures people being supported in report quality of life, with low scores specialist older-age actue physical health on measures of both related to higher quality of life.107

19 The National Institute of Mental Health Identification of early onset [in the have established a dementia and mental health formal set of guidelines for diagnosing depression in people with Alzheimer’s, problems which could be used to aid this process, as they reduce emphasis on verbal • Early onset dementia does not have expression and include and a distinct set of symptoms, but in their assessment.108 the repercussions of developing dementia at an earlier age are Carers are an integral part to ensuring significantly different, as dementia an accurate diagnosis of a mental health is predominantly seen as an issue problems, alongside a review of the exclusive to older people. There are people’s and a physical a number of particular features of 111 and mental examination.109 However, early onset dementia worth noting: research from CQC in 2014 showed • It’s more difficult to diagnose as that in 33% of care homes and 66% of presentations can be atypical hospitals in the UK this was failing to • There is often a higher rate of 110 happen. neurological disorders causing symptoms “…anecdotally, care service providers • The physical fitness of most younger can generally say when a person has people dementia and provide support. But it is more difficult to pick up on a mental • The markedly different social impact health issue..its a blurry line between the of the diagnosis if they have younger two.”- Interviewee from Skills For Care. families at home

20 The economic and social cost

There are growing bodies of evidence The cost to the UK economy of services around both the costs of poor mental for people living with dementia is health and dementia for society and (for far higher than all other conditions mental health primarily) the case for combined, currently making up 66% investment in preventioni. of all mental health service costs and estimated to increase to 73% by 2026.115 Poor mental health carries an estimated economic and social cost of £105 billion The economic impacts of both are wide in England per year. The national cost ranging and long lasting because of the of dedicated mental health support characters of the conditions and the lack and services across government of early and effective interventions. They departments in England amounts to £34 are associated with losing the ability to billion each year, and this is excluding work (particularly in relation to early support and services for dementia (NHS, onset dementia or severe mental health 2016).112 problems) and increased utilization of health, social care and other support The estimated cost of dementia services. These impact on the individual, is £26billion in England per year; on their family and friends and on £17.4billion of this being incurred by society. people living with dementia and their families, and £8.8billion by the state.113 Banerjee and Wittenberg (2009) set There is approximately £7 billion spent out a clear argument on cost savings by the Government on mental health from early diagnosis of dementia.116 services for dementia, broken down as However, from the available literature £.6billion on NHS mental health services, there doesn’t appear to be any estimates £.8billion on mental health in other for the cost savings resulting from NHS settings and 5.5billion on other preventing or early intervention for government mental health services.114 comorbid mental health problems.

i An overview of the economics evidence base for mental health across the life course can be found in Elliott, I. (2016) Poverty and mental health: a review to inform the Joseph Rowntree Foundation’s Anti-Poverty Strategy. London: Mental Health Foundation

21 Care and services provision for dementia and mental health problems

It’s a misconception that rights to health whilst dementia comes under the social and social care are the same. While there care budget. This can lead to significant is a universal right to free healthcare at barriers to getting appropriate care. the point of need across the UK, rights to Local government budgets have been publicly funded social care, housing, and cut significantly, by around 60% in welfare benefits are more conditional real terms, and this has impacted on rights that depend on the severity the funding available to adult social of need and the individual’s financial care services for later life.119 Many situation. Depending on the severity local authorities have prioritised social of dementia, people may be entitled care.120 This has resulted in eligibility to free NHS ‘continuing care’, means thresholds being tightened, so that only tested local authority social care, or a the most severe needs are often met combination of both. through state-funded social care. In total, around 400,000 fewer people Health and social care services in accessed care from local authorities in England are not currently set up in a the last parliament. Demand for social way which promotes an integrated care services are expected to on response to the needs of people living a similar scale to the NHS in the next with both mental health problems and parliament. The social care system will dementia. Increased sub-specialisation, cost more by 2020-21. Estimates from the decline of generalism in hospital the Association of Directors of Adult settings and a continued gap between Social Services (ADASS) put this cost mental health professionals and primary pressure at £4.3 billion a year by 2020- care all contribute to the ongoing lack of 21.121 co-ordination and oversight of peoples multiple and complex needs.117 Care at home and informal care There is a tendency within services to view people with dementia and Carers play a key role in the quality people with mental health problems as of life of a person with dementia. homogenous groups. There is a need for However, the needs of carers need to a intersectional focus to counter this also be assessed, separately to those of and explore the heterogeneous nature the person with dementia, and this is of people living with a single or dual often overlooked. experienced 118 diagnosis. by the carer can negatively impact the relationship between them and the One issue raised during the interviews person with dementia, so approaches to is that the NHS and health services are reduce this should be adopted. There free at the point of use, but social care are approximately 5 million carers in services are means tested. Mental health England, and this number continues problems are dealt with under health, to rise- it rose 11% between 2001 and 2011.122

22 There are 1.4 million people providing Care in hospitals and nursing over 50 hours of unpaid care per homes week in the UK. This is often combined with working, caring for other family members and traveling to provide the The Care Quality Commission have a care, so it can have a serious impact on key role to place in making sure that their life.123, 124 health and social care services provided to people with dementia and mental Carers can be under tremendous health problems are safe, effective, pressure at all stages of the progression compassionate, high-quality, and they of dementia, and their health and have a mandate to ensure care services 130 support needs should be separately improve by monitoring and regulating. assessed alongside those they are caring for.125 The Mental Health Foundation Very few people with dementia are cared produced a Carers Checklist as a for in hospital although many people simple outcomes based tool for people with dementia spend time in hospital with dementia and their carers.126 for other health reasons. At a general Evidence suggests that providing carers hospital, a shared care ward can treat with better information, training and patients with equally demanding mental strategies, including mental and physical health needs. Shared-care and emotional support, can improve wards have been found to be an effective their quality of life. START, Strategies model for delivering care to this complex for Relatives, is a manual based coping group as the wards offer shared strategy programme that has been decision making between disciplines and 131, proved effective in promoting the mental patients spend less time in hospital. 132 health of carers.127 Liaison older people’s mental health teams exist in some general Carers are often still very involved in hospitals, comprised of nurses, social the care of a person with dementia workers, consultants, registrars, PTs and even after care has been moved from . Their role is to assess the the home to another setting, and the mental health needs of older people, associated stress can be compounded provision of interventions and advising with , so this needs to be on treatment. These teams and their addressed.128 It’s important that when existence vary hugely across the country, a person with dementia is moved to a with some hospitals having no provision hospital or care home setting, the family of organised mental health support and and support network are encouraged to others having well developed teams 133 continue involvement, and a relationship according to a 2012 study. centred approach to dementia is promoted.129 [needs to say something A third of all people with dementia are about professional care at home; cared for in care homes and nursing social/domiciliary care, Admiral nurses, homes in the UK. An Alzheimer’s memory and , etc.] Society investigation in 2016 found that almost half of care home managers felt the NHS wasn’t providing residents with

23 dementia adequate and timely access dementia, can contribute to better to vital services, including mental health quality of life for people living with services. One manager reported ‘A dementia and research shows these resident who was saying she felt suicidal attitudes can be enhanced through had to wait over eight weeks to be appropriate training.135 referred to mental health services’.134 Skills for Care is a charity who provide One interviewee noted that it is often practical tools and support to help adult care home staff that will notice a person social care organisations in England to with dementia developing a mental develop an efficient workforce. They health problem, but will be unsure how share best practice, raise quality and to deal with this as dementia care is standards and make sure dignity is at often prioritized. Care home staff who the heart of service delivery to people exhibited hopeful attitudes regarding receiving care. This work includes dementia, recognising the responses programmes around mental health and and achievements of people living with dementia awareness.136

24 Care and service provision by the third sector

Voluntary organisations provide huge which has been launched in 2016 as part resources for both people living with of their devolution ambition to make GM dementia or mental health problems, the best place for people with dementia or their carers. Dementia charities have and their carers to live. Although it’s not vast libraries of information online on clear to what extend this programme will their websites, run Memory Cafes and target people living with a comorbidity, peer groups, have support workers partners include some mental health and run Dementia Awareness sessions. organisations and it aims to improve the Likewise, mental health charities have lived experience, reduce social isolation huge amounts of information online (a key risk factor for poor mental health) about mental health problems, run and to take a co-production approach.137 awareness training, self-management and peer groups. However, there is little Services for those living with crossover between these groups, with early onset dementia and only a handful of organisations, such as Mental Health Foundation and Age mental health problems UK, running both mental health and dementia programmes. There is a dearth in services for people under 65 currently. There is currently no “(Making Space) started as a mental standard provision of care for younger health organization which later on people with dementia and their families moved to provider dementia services… in the UK and there is little involvement our approach has been to maintain of families in care provision. Specialist a person-centred focus, so our staff services for early onset dementia are are able to provide or refer people to consistently called for but continue the right services..what we are doing to be overlooked in English policy and is trying to look at more than just service development (Roach and Keady, 138 dementia”- interviewee from Making 2012). One organisation highlighted Space. in an interview that is trying to change that is Young Dementia UK, who have 139 One example given during an interview developed some resources online. of a programme aiming to improve the quality of life for people with dementia “They (services) need to take a ‘whole by looking at wider issues, including life’ approach rather than a disease mental health, is the Dementia United management approach”- Interviewee programme in Greater Manchester (GM), from Race against Dementia

25 Support for mental health problems in people living with dementia

Appropriate and timely treatment for Social interventions: Interventions, mental health problems can significantly including multisensory stimulation increase the quality of life of a people and exercise, should be made available living with dementia. Modified people living with dementia who have treatments used for those without a comorbidity of depression and/or dementia can be effective: anxiety. Forbes et al. (2013) conducted a systematic review across the globe that Medication: Although recent research found that exercise programmes may has found that two commonly have a significant impact on improving prescribed do not cognitive functioning, and that these work on the depression of people with programmes may have a significant Alzheimer’s disease,140 the current NICE impact on the ability of people with guidelines on dementia addressing dementia to perform daily activities.147 depression recommends that people One study found that older adults with who have dementia and a major dementia are sedentary for most of depressive disorder should be offered the day, not achieving the minimum medication.141 Therefore, recommended 30 minutes of activity a there is a need for more research into day.148 For those at the most advanced which antidepressants are most effective stages of dementia, carers make take and it is vital that the prescribing of on a crucial role in the undertaking of antidepressants be monitored closely for activities that support good mental effectiveness and any negative effects or health, such as helping the person to interactions with other .142 exercise, finding ways to let the people continue to contribute actively to family Psychological interventions: A range life or by scheduling activities that the of treatments are supported person enjoys such as gardening.149,150 by evidence and the NICE guidelines The Seattle protocols encourage on dementia. Cognitive behavioural to engage the person with therapy (CBT), which can be adapted dementia in pleasurable activities to involve participation of carers, and this has been found to reduce has been shown to be effective in depression.151 In an evaluation carried out treating depression in people living by the Mental Health Foundation on peer with dementia,143 as has therapy, support groups for people with dementia recreation therapy animal- in extra care housing with 21 therapy and reminiscence therapy- tenants, it was found that people with even in those in the later stages of early stage dementia who participated dementia.144, 145 However, access to in the groups showed improvements in is limited, both by the demand wellbeing, and practical on services from the general population coping strategies.152 and the prioritization of dementia over mental health problems by medical professionals.146

26 Early treatment for mental health collaborative and interdisciplinary while problems or dementia can have a working with statutory and voluntary beneficial effect on other existing services to provide a needs-based conditions. The NHSE Dementia toolkit service for people complex needs, such advises that ‘improving the skills of as living with mental health problems primary care in relation to cognitive and dementia.153 problems may also have secondary benefit in improving the detection “It’s like people (living with dementia) and treatment of depression in older with a set of problems only come to people’ (p6). A strong message that the attention of services late in the came through from the interviews was day if they were not already known that services must be commissioned to mental health services. This means on the basis of need and not age alone, many aspects of their daily life have to ensure that those experiencing deteriorated by the time they reach the early onset dementia, or older people attention of services...their life problems experiencing a mental health problem may be so complicated that no service will have their specific, distinct can deal with all of them”- interviewee needs met- ie a personalization of from Race against Dementia care approach. Services need to be

27 Gaps and resources identified

There is a lack of research regarding the Clear gaps have been identified prevalence of mental health problems in addressing the dementia and in people living with dementia, with mental health needs of marginalised most research currently focused on communities. According to the Policy depression, and much less is known Research Institute on Ageing and about the prevalence and development Ethnicity(PRIAE), barriers faced by of other common mental health minority communities include:156 problems- such as anxiety- and severe • Members of BAME communities mental health problems- such as sometimes have little confidence psychosis or schizophrenia. that services will meet cultural, linguistic or religious needs. Dementia navigators, who provide • Interpreting services are in short support to people living with dementia supply, are inadequately advertised and help them to find their way around and often have limited funding. the health and social care system, • Poor access to services: potential have been identified as a key resource clients may be unaware that services for people with dementia154 and one interviewee suggested this service could exist, or uncertain whether they may be adapted, through training, to provide use the services. additional support for those who also • Public sector providers assuming, have mental health problems that need often incorrectly, that minority addressing. ethnic communities have strong community/family support networks. There is limited of research into stigma, information needs and support issues of These also came through in the ‘other’ communities within England with interviews, with service providers it comes to comorbidity, including into overwhelmed when it comes to the the Irish and black African-Caribbean needs of the general population, meaning populations (for reasons discussed the needs of marginalized communities above), the Jewish population (who have often get overlooked especially people an aging population with over 20% in with learning disabilities and people from 155 the 65+ age category) and all other BAME communities. culturally diverse communities and populations.

28 Conclusions and recommendations

‘Population ageing is one of humanities the invisibility of the conditions, older greatest triumphs, It is also one of our people being less involved in activism, greatest challenges’- WHO.157 the dominance of carers voice, the framing of mental health as an issue of Dementia and mental health problems old age, and the portrayal of people with are now recognized as two of the key dementia and mental health problems public health issues of the 21st century, as ‘victims’. For those people with a yet there is still a dearth in research on co-morbidly of dementia and a mental the causes of both or the relationship health problem the issue is even more they place when present together. The complex, but people with complex prevalence of comorbid dementia and conditions must not be forgotten when mental health problems is unknown. trying to advance people’s rights to Policy guidance on the mental health health and social care services. needs of people living with dementia are poor in the UK. Recommendation: develop relationships between mental health and dementia Recommendation: co-produce a representative organisations and the mental health and dementia research wider disability movement; and advocate programme with people with lived for the inclusion of people living with experience of this co-morbidity, their mental health problems and dementia families and carers. within the UN review of the UK’s compliance with the Convention on the Recommendation: develop data systems Rights of Persons with Dementia. to ensure mental health and dementia Receommdneation: develop a rights data can be analysed in an integrated based approach to health and social care and strategic manner to inform provision for people living with mental provision, policy and research. health problems and dementia, and their Recommendation: develop policy and families and carers. practice guidance on the mental health needs of people living with dementia. A holistic, integrated approach is vital to addressing the needs of people in Neither dementia nor mental health later life. Possible mechanisms for the problems are readily recognised as delivering a holistic approach include disability issues by mainstream society, achieving parity of esteem for mental often discussed using the dominant health including integration of services, . The wider disability and through the remodeling of health movement has not effectively involved service. But looking at the learnings people with mental health problems and from the movement, dementia. This is due to a number of it could be argued that a better model issues, such as the low rates of diagnosis, may be to move away from

2911 defining and leading the agenda, with The importance of involving older social inclusion and support in the people in decisions about their own lives community the mean focus. Those living and about how policy and services are with dementia should be provided with shaped is becoming recognised. More the same opportunities as others which must be done to harness the assets of promote a mentally healthy later life. people in later life to influence policy Support to keep active and engaged and practice and to support one another. in communities should be provided Focused work must be undertaken for all. This should use a rights-based, to give voice to seldom heard groups citizenship and community inclusion including those who are unheard due to approach whereby older people are factors such as dementia/mental health valued as equal citizens and community comorbidity. It’s vital that people with based, collective solutions are provided. dementia affected by mental health The move towards ‘age friendly’ problems are directly involved when communities and cities (e.g. Manchester, research is being done on the needs and Bristol) as part of the World Health what works for them, recognising the Organisation age friendly movement importance of people’s lived experience. provide examples of putting this into practice as well as opportunities for Recommendation: ensure that co- learning. Initiatives can range from production principles and approaches flexible volunteering and employment, to are adopted across all provision, policy, participatory arts to physical activities. research developments and resource the work of representative organisations Recommendation: develop a programme such as the Dementia Engagement and to pilot social inclusion and community Empowerment Project and the Dementia based interventions, and to scale and Alliance for Culture. test promising approaches. Recommendation: develop programmes Recommendation: develop programmes of provision, guidance, policy and of provision, guidance, policy and research for members of BAME research for people with early onset communities; and scale and test dementia; and scale and test promising promising approaches. approaches.

11 3011 Annex 1: Methodology

This Annex describes the methodology followed for the evidence review. For the literature review a selective approach was used by the team. Key high-quality research publications, published since 2010, from England and other countries where the activities and learning are culturally transferable- the rest of the UK, Europe, USA and Canada will therefore be included.

Exclusion criteria: articles focused on treatment or symptom reduction, articles that cannot be not be accessed online, articles that cannot be accessed in full using the NHS Knowledge Network, books, small qualitative/quantitative studies focused solely on medical factors, research that is from non-transferable social contexts, newspapers articles and duplicates.

Peer reviewed published literature

The team performed an independent literature review using Boolean operators in the following combinations: (dementia OR Alzheimer disease) in All AND (“mental health” OR “mental illness” OR distress OR depression)’ in the Title, for the date range 2010-2015, on the following databases: ASSIA, Barbour Index, CINAHL, Cochrane Library, EMBASE, Emerald, Health Business Fulltext Elite, OVID databases (includes Medline), RefWorks, Transfusion Evidence Library, TRIP: Turning Evidence Into Practice, Web of , EBSCO Psychinfo, WHO Health Evidence Network, Wiley CCTR, Wiley CDSR, UK Journal of Dementia Care, Journal of Quality in Ageing and Older Adults and The Journal of Public Mental Health special issue focused on older age.

31 Step 1: Search in the NHS Knowledge Network The table below shows the number of results per year in each of the aforementioned journals NHS found using the NHS Knowledge Network.

Database No. of Results EBSCO PSYCINFO 2015 (72 results) 2014 (91 results) 2013 (113 results) 2012 (101 results) 2011 (95 results) 2010 (0) ASSIA 2014 (9) 2013 (26) 2012 (14) 2011 (17) 2010 (20) OVID Medline 2015 (15) 2014 (115) 2013 (128) 2012/2011/2010 (0) CINAHL 2015 (12) 2014 (60) 2013 (66) 2012 (55) 2011 (53) 2010 (0) Ovid 2015 (126) 2014 (50) 2013 (30) 2012 (5) 2011 (1) 2010 (1)

32 Database (cont.) No. of results (cont.) Wiley CCTR 2015 (4) 2014 (18) 2013 (26) 2012 (14) 2011 (15) 2010 (5) OVID HMIC 2015 (1) 2014 (2) 2013 (13) 2012 (8) 2011 (8) 2010 (7) Health Business Fulltext Elite 2015 (0) 2014 (4) 2013 (2) 2012 (4) 2011 (2) 2010 (0) Wiley CDSR 2015, 2013, 2012, 2011, 2010 (0) 2014 (1)

Note: journals not mentioned in this table yielded 0 results for the years 2010-2015.

Step 2: Exclusion The first column of the table below shows the total number of articles. The second column shows the number of articles minus those that were excluded by screening titles, place, and whether there was a full access to PDFs. The third column shows the final number, one we came to after excluding articles by the extract.

Total number (sum of all Total number left after Total number after second the results above) initial exclusion exclusion 1409 51 23

33 Grey literature

As there is no standalone policy around later life, current policy documents, guidelines and reports, mainly from England but including some key international resources, with relevant elements on dementia in relation to mental health will be identified- through online searches and references from other stakeholders- and studied. The review will build on the work undertaken previously by Public Health England with Strategic Partner Programme partners- including a briefing on mental health developed in 2014 by the Mental Health Providers Forum that was included in an equalities based dementia guidance document for commissioners.

The initial documents identified were: • DoH: Prime Minister’s challenge on Dementia 2020 and implementiation plan • DoH: Dementia-friendly health and social care environments • MHF: Promoting Mental Health And Well-being In Later Life • MHF: Dementia, rights and the social model of disability: A new direction for policy and practice • MHF: Getting on… with Life • MHF: The Lonely Society • AgeUK: Loneliness- the state we’re in

Step 2: Google search 2 Google searches were performed: 1. (Dementia and “Mental Health”) AND (Strategy or Guidelines or “Impact Assessment”). The first ten pages were reviewed. 2. (“Human Rights”) AND (Dementia and “Mental Health”) AND (Strategy or Guidelines). The first ten pages were reviewed.

Step 3: Exclusion Exclusion criteria: Local Papers, News Papers, Academic Papers –as they should have come up in the peer reviewed search-, papers from non-transferable social contexts, papers published before 2009 –we include in this search papers from 2009 because this is when the Dementia Strategy for England was published.

34 Interview questionnaire

The below questionnaire was used to gather feedback from service providers. Five completed interviews took place.

Mental Health and Dementia: a review of evidence

The Mental Health Foundation is doing an evidence review for the Mental Health Providers Forum on mental health and dementia, and is seeking key stakeholders views to identify issues and recommended references. To this end, we would appreciate if you could take a few minutes to answer the following questions. Please return this form back to Marguerite Regan at: [email protected]

Please state whether you want your answers to remain anonymous:

Date:

Question 1: Are you aware of many service users living with both mental health problems and dementia? If so, and you work closely with them, what steps do you tend to take to deal with this, what resources do you use?

Question 2: What are the difficulties facing service providers identifying and supporting people living with dementia who might also be living with mental health problems?

35 Question 3: Are there any gaps in resources that need to be addressed in order to provide adequate services or support?

Question 4: What changes do you think need to happen in health and social care to support people living with dementia who are also living with mental health problems?

Question 5: Do you know of any resources or references available that we should be considering for this review?

Any other comments

Many thanks for taking the time to complete this questionnaire.

Marguerite Regan Policy Manager [email protected]

36 Annex 2: Sub-types of Dementia

The following descriptions were taken memory may be well preserved at first, from the NHS England Dementia Revealed but deteriorates later. The key features are Toolkit158 and the Guidance on Dementia difficulties with attention, at night, Care for Designated Centres for Older marked fluctuation in levels of people: and , vivid, and often highly developed, hallucinations, sensitivity to Alzheimer’s disease neuroleptics and REM . Alzheimer’s disease is the most common form of dementia making up 60% of Frontal-lobe dementia/Pick’s disease cases, is degenerative, and its causes Dementia (FLD), which was are unknown. The key feature of AD is previously known as Pick’s Disease. Frontal the deterioration in memory and other Lobe Dementia is particularly difficult , such as reasoning, because it often presents in a younger age flexibility, task sequencing etc. In general group. In the behavioural variant, it may the changes are gradual over time and the take several years before the condition is illness may last several years. diagnosed. The development of inflexibility and unreasonableness, blunting of social Vascular dementia sensitivity and, sometimes, aggression may Vascular dementia is the second most damage important relationships before the common type of dementia. It is usually diagnosis is suspected. caused by mini that constrict blood flow and oxygen to the brain, or an episode Creutzfeldt-Jacob disease of illness The person may get worse quite Creutzfeldt-Jakob disease (CJD) is the suddenly, and then not change again most common human form of a group until the next stroke happens. People can of rare, fatal brain disorders known as experience this and Alzheimer’s together- diseases. Prion diseases, such as known as mixed Alzheimer’s/Vascular Creutzfeldt-Jakob disease, occur when Dementia.159 prion protein (which is found throughout the body but whose normal function isn’t Lewy body dementia and dementia in yet known) begins folding into an abnormal Parkinson’s disease three-dimensional shape. This shape These two types of dementia are related change gradually triggers prion protein in but not quite the same. In Lewy Body the brain to fold into the same abnormal dementia, dementia comes first and shape. Through a process scientists don’t ‘’ often develops later - yet understand, mis-folded prion protein although often without . In dementia destroys brain cells. Resulting damage in Parkinson’s Disease, the Parkinson’s leads to rapid decline in thinking and Disease comes first, and one in six patients reasoning as well as involuntary muscle with Parkinson’s Disease go on to develop movements, confusion, difficulty dementia. In Lewy Body Dementia, and mood changes.

37 Alcohol related dementia • alcohol can inflame the stomach Korsakoff’s syndrome is a brain disorder lining, cause frequent vomiting and usually associated with heavy alcohol make it difficult for the body to consumption over a long period. absorb the key vitamins it receives. Although Korsakoff’s syndrome is not Alcohol also makes it harder for the strictly speaking a dementia, people with liver to store vitamins. the condition experience loss of short- term memory. Korsakoff’s syndrome is Korsakoff’s syndrome is part of a caused by lack of thiamine (vitamin B1), condition known as Wernicke-Korsakoff which affects the brain and nervous syndrome. This consists of two system. People who drink excessive separate but related stages: Wernicke’s amounts of alcohol are often thiamine followed by Korsakoff’s deficient. This is because: syndrome. However, not everyone has a • many heavy drinkers have poor clear case of Wernicke’s encephalopathy eating habits and their diet does not before Korsakoff’s syndrome develops. contain essential vitamins • alcohol can interfere with the conversion of thiamine into the active form of the vitamin (thiamine pyrophosphate)

38 Annex 3: Definitions of mental health problems

Mental health problems are usually defined schizophrenia, a person’s understanding and classified to enable professionals and interpretation of the outside world can to refer people for appropriate care become disrupted and they may: and treatment. But some diagnoses are • lose touch with reality controversial and there is much concern in • see or hear things that are not there the mental health field that people are too • hold irrational or unfounded beliefs often treated according to or described by their label. This can have a profound • appear to act strangely because they effect on their quality of life. Nevertheless, are responding to these delusions and diagnoses remain the most usual way of hallucinations. dividing and classifying symptoms into groups. The following definitions come Bipolar disorder from the Mental Health Foundation Bipolar disorder, formerly known as 160 website: manic depression, is a chronic disease of abnormal mood characterized by episodes Depression of elevated mood or depression, or, less Depression is a common mental disorder frequently, a mixed affective presentation that causes people to experience of both. They may also experience what depressed mood, loss of interest or are called ‘grandiose’ ideas or delusions pleasure, feelings of guilt or low self-worth, about their abilities and powers, and a loss disturbed sleep or appetite, low energy, and of judgement. People in a high phase can poor concentration. be increasingly goal directed, meaning they can get themselves into difficulties that Anxiety they would normally avoid – they may leave Anxiety is a type of fear usually associated their job, spend money they don’t have, with the thought of a threat or something engage in high-risk situations or give away going wrong in the future, but can also possessions. arise from something happening right now. Around 1 in 6 people in the UK will Psychosis experience a mental health problem like Psychosis describes the distortion of anxiety each year, which has steadily a person’s perception of reality, often increased over the past 20 years. It is also accompanied by delusions (irrational and likely that individuals do not seek help for unfounded beliefs) and/or hallucinations significant levels of anxiety, meaning many (seeing, , smelling, sensing things remain without diagnosis or treatment. that other people can’t). Psychosis is a symptom of some of the more severe forms Schizophrenia of mental health problems, such as bipolar Schizophrenia is a diagnosis given to some disorder, schizophrenia, or people who have severely disrupted beliefs some forms of . and experiences. During an episode of

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47 MAY 2016

mentalhealth.org.uk

The Mental Health Foundation, a UK wide charity, has been in existence for 65 years. We focus on researching and evaluating fresh approaches to mental health with a view to advocating helpful policy change and the roll out of best practice more widely.

Our work is centred on prevention – we believe that there is far more scope for interventions that prevent people developing mental health problems and which sustain recovery.

Access to mental health services is critical, but as a society we also need to focus on bringing down the need for these services and developing good mental health for all.

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