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«Faculty for People with Intellectual Disabilities Dementia and People with Intellectual Disabilities Guidance on the assessment, diagnosis, ...»

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dementia care training for all staff working with older people; and improvement of care for people with dementia in general hospitals. Since then NICE has published quality standards and audit tools (NICE, 2010, 2013) covering in detail principles of care, risk 6 Dementia and People with Intellectual Disabilities factors and prevention, early identification, diagnosis and assessment, promoting choice, providing support, integrating and co-ordinating care and service provision, and promoting independence and maintaining function and also guidance on interventions, living arrangements, hospital and palliative care. These are all relevant to people with intellectual disabilities, given the risk of dementia at a younger age in people with intellectual disabilities (recognised in the NICE guidance), particularly affecting people with Down’s syndrome, with the added complexity of the potential difficulty recognising the possibility of dementia and arriving at an accurate diagnosis given pre-existing cognitive impairments.

The NICE guidance and the quality standards are an evidence-based and informed synthesis of research, previous reports and policies. As with the earlier Department of Health and the Care Services Improvement Partnership (CSIP) guidance Everybody’s Business: Integrated Mental Health Services For Older Adults: A Service Development Guide (DH/CSIP, 2005), the NICE guidance recognises that effective services will only be achieved through joint working and efficient partnerships. The earlier National Audit Office Report (NAO, 2007) had concluded that overall, services were not currently delivering value for money to taxpayers or people with dementia and their families; that too few people were being diagnosed or being diagnosed early enough, and that early intervention was needed to improve quality of life; and, finally, that services in the community, care homes and at the end of life are not delivering consistently or costeffectively against the objective of supporting people to live independently as long as possible in the place of their choosing. The NAO advocated a ‘spend to save’ approach, with upfront investment in services for early diagnosis and intervention and improved specialist services, community services and in general hospitals, resulting in long-term cost savings from prevention of transition into care homes and decreased length of hospital stay. The Commission for Social Care Inspection had also reported on people’s experiences of living in a care home in their report See Me, Not Just the Dementia (CSCI,

2008) confirming the importance of a positive communication style with people with more advanced dementia. These are all very much echoed in the National Dementia Strategy and in the Prime Minister’s challenge, suggesting that these and other previous reports are now having an impact. This is a very positive development.

The above are examples of dementia-specific policies and guidance; however, there is also a broader context which is relevant to this updated guidance. First, is the serious problem of the potential for neglect and abuse within health and social care settings. The reports of the Mid Staffordshire NHS Foundation Trust Public Enquiry (Francis, 2013) and from the

Department of Health on the independent hospital, Winterbourne View – Transforming Care:

A National Response to Winterbourne View Hospital (DH, 2012), have highlighted the particular vulnerabilities of older people with dementia and people with intellectual disabilities in institutional hospital settings. Earlier concerns about the abuse of people who were vulnerable in the community had led in England and Wales to the publication in 2008 of No Secrets (DH, 2008a) and to all areas of the country establishing safeguarding policies. Abuse of people with intellectual disabilities and those with dementia is not uncommon, whether in hospitals, family homes or residential care. The challenge is to prevent it, as far as possible, and to detect it and respond quickly where it is identified as having taken place.

Guidance on their Assessment, Diagnosis, Interventions and Support 7 Secondly, the move towards individual health and social care budgets that aim to give choice and control to people in need of health and social care services including people with intellectual disabilities and people with dementia has become a reality. For people with disabilities this had its origins in the 1996 Community Care (Direct Payments) Act but in reality only in the last few years has it become the funding model of choice with the intention of extending it to other areas of need and to the funding of health care.

Thirdly, there have been changes in the law and in international conventions that have implications for the way in which care is provided and in which choices are made as to the services people receive.

Mental Capacity issues are laid out in legislation in many nations, e.g. Adults with Incapacity Act (Scotland) 2000 and the Mental Capacity Act (England and Wales) 2005.

The Mental Capacity Act 2005 is well established in England and Wales although a recent post-legislative review by the House of Lords has raised concerns about its implementation.

However, the amendment to the Act that introduced the Deprivation of Liberty Safeguards (DoLS) was severely criticised by the House of Lords Committee and also has been subject to a recent ruling from the Supreme Court that has implications for the support of people with intellectual disabilities and also those with dementia whether or not they have intellectual disabilities. This ruling has broadened the definition of what is meant by ‘deprivation’ and it is likely that many more people with intellectual disabilities, and particularly those who have developed dementia, will be considered to be deprived of their liberties and in need of the safeguards. In 2008 the UN Convention on the Rights of People with Disabilities (UN, 2008) also challenged concepts of legal capacity arguing that everyone must be presumed to have ‘legal capacity’. The Equality Act has also been enacted, requiring authorities to make ‘reasonable adjustments’ when seeking to meet the needs of people with disabilities. These various legal developments when taken together have very significant implications for the group of people that are the focus of this guidance.





1.2 Assumptions made within the guidance document Within this document, a number of assumptions are made throughout. These include the need for effective partnership working between all agencies involved in the care of people with intellectual disabilities and dementia as highlighted in reports cited in the previous section. The working party recognises that each area will be configured to meet local need, but effective care can only be provided when there is good partnership working within health services – between intellectual disabilities and older people’s services, and across statutory, private and voluntary agencies.

Regardless of how each service is configured, the working party has assumed that certain principles and ways of working are already integral to the delivery of services for people with intellectual disabilities, and that these will also be available to people with intellectual disabilities who develop dementia. It has been assumed that services already deliver care in line with Valuing People (DH, 2001) ensuring that everyone who wants one has a Person Centred Plan and a Health Action Plan, as well as an individualised care plan. It has also been assumed that services will be delivered in line with both their relevant mental capacity legislation, the Human Rights Act and relevant National Standards for dementia care (e.g.

NICE, 2006, 2010, 2013).

8 Dementia and People with Intellectual DisabilitiesSection 2 – Epidemiology

2.1 Older population with intellectual disabilities There have been significant improvements in the mean life expectancy of people with intellectual disabilities from an estimated 18.5 years in the 1930s to 66 years in the 1990s (Braddock, 1999). The life expectancy of people with mild intellectual disabilities now approaches that in the general population of a similar socio-economic status, but the life expectancy of people with more severe levels of intellectual disabilities remains reduced compared with the general population.

Given these improvements, the overall population with intellectual disabilities is steadily increasing and it has been predicted that the proportion of people with intellectual disabilities over 65 years of age will have doubled by 2020, with over a third of all people with intellectual disabilities being over 50 years of age by that time (Janicki & Dalton, 2000;

McConkey et al., 2006). This is also true for the population of people with Down’s syndrome. The birth prevalence of Down’s syndrome in England and Wales has remained relatively stable despite antenatal screening (which has been offset by an increase in Down's syndrome resulting from younger maternal age), while mean life expectancy has increased to 58 years (Wu & Morris, 2013). This has resulted in a growing population of older adults with Down’s syndrome. It is because of these factors that consideration needs to be given to age-related illnesses that most commonly occur in later life, such as dementia.

Estimating prevalence rates of dementia can be problematic because of a number of methodological issues. These include diagnostic difficulties associated with dementia in a population which has pre-existing cognitive and functional impairments and the complexity of establishing accurate population samples of people with intellectual disabilities. However, there is evidence from several studies that people with intellectual disabilities have an increased risk of developing dementia compared to that observed in the general population. In particular, those with trisomy 21 resulting in Down’s syndrome have an earlier age-related risk of developing dementia of the Alzheimer type. There is very limited research investigating the specific risk of dementia and other age-related disorders in those with other specific syndromes, some of which are associated with a reduced lifeexpectancy, or with autism.

2.2 Prevalence rates of dementia among older people with intellectual disabilities (excluding people with Down’s syndrome) Several studies have investigated rates of clinical dementia among people with intellectual disabilities living within the community and used established or modified criteria based on systems for the diagnosis of dementia. Moss and Patel (1995) reported that 12 per cent of a group of people with intellectual disabilities over age 50 years had dementia. Cooper (1997) found that the rate of dementia increased as expected in a population-based study with just over 20 per cent of those over the age of 65 years meeting criteria for dementia.

Strydom et al. (2007) reported findings from a two-stage population-based survey of adults Guidance on their Assessment, Diagnosis, Interventions and Support 9 with intellectual disabilities (without Down’s syndrome) across several London boroughs.

They found that prevalence rates varied depending on the diagnostic criteria used, with DSM–IV criteria resulting in the highest rate and ICD-10 the lowest. Rates for dementia, of whatever cause, using DSM–IV criteria were 13.1 per cent in those 60 years and over and

18.3 per cent in those 65 years or over. This compares to prevalence rates in the general population of 1 per cent for 60–65-year-olds to 13 per cent for 80–85-year-olds and 32 per cent for 90–95-year-olds (Hofman et al., 1991). See Figure 1 below for a comparison of dementia rates between individuals with Down’s syndrome, intellectual disabilities and the general population.

Alzheimer’s disease was found to be the most common type of dementia, and had a prevalence of 8.6 per cent in those aged 60 and older, three times greater than comparable general older adult population rates, but cases of Lewy body dementia, vascular dementia, and fronto-temporal dementia were also identified based on clinical observations while rates varied according to diagnostic criteria used – DSM–IV criteria were more inclusive than ICD10 (Strydom et al., 2007). Prevalence rates increased with age though shifted towards younger ages compared to the general population but did not differ significantly between mild, moderate and severe intellectual disabilities groups (Strydom et al., 2009).

Overall, the incidence rate for dementia in those aged 60 and older was estimated to be 54.6/1000 person years with the highest incidence rate in the age group 70–74 (Strydom et al., 2013).

2.3 Prevalence and incidence rates of dementia among people with Down’s syndrome The association between Down’s syndrome and the risk of ‘precipitated senility’ was first reported by Fraser and Mitchell in 1876, with Struwe (1929) describing the significant Alzheimer-like neuropathological changes in the brains of people with Down’s syndrome, and almost all older adults with Down’s syndrome were found to have the neuropathological hallmarks of Alzheimer’s disease at post-mortem (Mann, 1988) which has since also been demonstrated with in-vivo amyloid PET imaging studies (Landt et al., 2011; Hartley et al., 2014).

Studies have reported rates of dementia meeting the necessary criteria that start at a few percent from 30to 39 years of age, increasing to 10–25 per cent in the 40 to 49-year-old group and to 20 per cent and 50 per cent in the 50 to 59-year-old group and between 30 per cent and 75 per cent aged 60 years or older (Hewitt et al., 1985; Wisniewski et al., 1985;

Lai & Williams, 1989; Holland et al., 1998). Between 50 and 60 years of age the prevalence of dementia doubles with each five-year interval (Coppus et al., 2006). Studies have varied in their findings beyond the age of 60: some studies have found that prevalence rates continue to increase, with most individuals eventually diagnosed with dementia (Visser et al., 1997; Tyrrell et al., 2001) whilst others described a decrease in prevalence in the older age group due to the increased mortality associated with dementia (Coppus et al., 2006).

Incidence increased steadily with increasing age and did not decline after age 60, from 2.5 per 100 person years in those aged 50 to 13.31 per 100 person years in those aged 60 and older (Coppus et al., 2006).



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