Older People with Learning Disabilities: Workforce Issues
The life expectancy of people with learning disabilities has increased substantially. Services for older people with learning disabilities are provided by various sectors and practitioners (generic health and social care, or specialist learning disability or old age). The literature suggests that practitioners do not feel well-equipped to support people with learning disabilities as they grow older, and older people’s services do not always have the opportunity to share experiences and skills. This paper highlights areas such as dementia support, where the intersection between services is not clear, and explores what might help practitioners to meet the needs of people with learning disabilities as they grow older.
KEYWORDS: LEARNING DISABIEITIES; DOWN’S SYNDROME; WORKFORCE; DEMENTIA
In the last few decades, the life expectancy of people with learning disability has been rising steadily, and their health and social care needs may be changing. These needs include individualised responses to the changes associated with the growing incidence of age-related dementia, especially among people with Down’s Syndrome – the most common cause of learning disabilities (Turk et al, 2001) at younger ages than the general population (Whitehouse et al, 2000). In addition, people with learning disabilities who are growing older, as well as their carers and service providers, are not yet sure which services are most effective or should be developed. As a result of these uncertainties, older people with learning disabilities may be misplaced, under-served and live with an array of unmet needs.
In this article we focus on the ‘grey areas’ where the intersections between services are not clear. We will explore what might make the skills and experience of practitioners in older people’s services more accessible to people with learning disabilities. Our discussion will focus on older people with learning disabilities, in particular those with Down’s Syndrome, among whom physical health problems such as heart problems are likely to be common. We argue that one key building block for an effective service for older adults with learning disability is a workforce with skills, knowledge and values that will provide high-quality support and enable people to maintain their well-being as much as possible.
The White Paper Valuing People states that service developments should:
enable people with learning disabilities to access a health service designed around their individual needs (DoH, 2001).
But what is the best way to address the wider and inter-related needs of later life? Who should deliver support, and what sort of training is needed? Will integration between health, social care and housing support services meet the needs of older people with learning disabilities? At the least, how can practitioners from different service worlds be aware of the support that others offer and how to build on it? The setting up of a national workforce group by the Valuing People Support Team in summer 2004 means there is scope to debate these issues.
Health in later life
People with learning disabilities are living longer (to 50-55 years on average) and some of them are living to 70 or older (Yang et al, 2002). In the UK and other developed countries there has been a steady increase in life expectancy for people with Down’s Syndrome: from nine years in 1929 and twelve years in 1949, to 1997, when eight out often reached the age of 50 and some their 60s and 70s (Kerr, 1997). Cooper (1997) observes that there are now more people aged 40 or over with learning disabilities than children with learning disabilities. However, their life expectancy is still significantly lower than that of the general population (75 for men and 80 for women in the UK; ONS, 2001).
There is also considerable evidence of poor health among people with learning disabilities. For example, (in)activity levels among adults living in a variety of settings in UK are equivalent to those of non-disabled people aged over 75. This means that people with learning disabilities face serious associated health risks and, as with the general population, smoking and drinking alcohol may have long-term effects. Rates of obesity are significantly higher among women with learning disabilities than women in the general population (Emerson et al, 1999). Although people with learning disabilities have high levels of unrecognised illness, often they have poor access to health promotion (Band, 1998) and some of what they do see is of limited scope; one study notes that it may centre on sex and cooking (Jobling, 2001). Support staff need to encourage people to attend regular check-ups, and help them understand and adopt health promotion messages.
Across the life course a number of other factors are commonly associated with learning disabilities such as Down’s Syndrome, although individuals differ.
* Some of today’s older generation may have had restricted opportunities for education and participation in ordinary life settings. They may not be familiar with making plans and choices about social support and community activities. It is therefore important for support staff to be able to help people with learning disabilities to set out their needs and preferences for the future.
* Some people with learning disabilities now have considerable experience of systems such as direct payments, care planning, selecting staff, and consultation and involvement. This experience may not be recognised in some practices in older people’s services.
* Support with healthy eating, physical activities and regular check-ups may be important for people with learning disabilities as they grow older, particularly as they retire from work.
* Mild to moderate hearing loss is more common in people who have Down’s Syndrome, as are visual problems such as squints and long- and short-sightedness. Such problems may worsen in later life, but may be under-recognised.
* There is an increased chance of developing Alzheimer’s disease in middle age, 20 to 30 years earlier than the general population, and the effects may be slow to diagnose or can be confused with other problems. Those supporting people with Down’s Syndrome need to acquire knowledge of the signs associated with dementia, to refer people for assessment and possible treatment, and to provide timely support. Such support might include thinking about how to tell people their diagnosis, and how to explain to fellow residents, for example, what is happening (if this is agreed).
Pulling all this together to consider the health and support needs of people with learning disabilities, and in particular those with Down’s Syndrome, suggests that increasing age results in greater likelihood of additional physical and mental health problems in some areas. However, reduced life expectancy of those with the most severe disabilities may mean that:
there is convergence in later life between people with learning disabilities and those without (Holland, 2000).
We do not know much about the positive health behaviours that may protect some people from illness or disability in later life. But in one area we have greater evidence, although many family carers and practitioners remain unaware of the risk of dementia faced by people with Down’s Syndrome, or feel ill-equipped to recognise and meet their needs (Oliver & Holland, 1986; Wilkinson & Janicki, 2002). The dementia care workforce has such expertise, mainly in respect of people who are much older and who may not have had previous disabilities. Can this experience be harnessed?
Who provides support?
While people with learning disabilities have on average higher physical and mental health needs than the general population, in fact they visit their GP less often and use fewer preventative services than the average population (Parrish, 1998). Older people with learning disabilities are usually described in the literature as an under-served group, especially with regard to health care (Band, 1998). For this reason Valuing People has made health improvement and monitoring one of its objectives.
People with learning disabilities, including those with dementia, live in a variety of settings: independently, with their families, in group homes, in care homes and in other places. The needs of family carers as they grow old have been the subject of specific follow-up and local surveys. The Foundation for People with Learning Disabilities is currently providing a supportive network for practitioners and policy makers in this area (www.learningdisabilities.org.uk/page.cfm? pagecode=PIOF) as part of its Older Family Carers Initiative.
In the UK, almost two-thirds of adults with learning disabilities live with their families (DoH, 2001). Most other adults with learning disabilities, 37%, live in some kind of communal housing, a figure that increases to 70% among people over 55 years old. How do such services meet the needs of older people with learning disabilities? The Department of Health recognises that:
high health care needs can be met in non-institutionalised settings if the issues relating to staff competence and skills are addressed (DoH, 1998).
However, there are many examples (Thompson & Wright, 2001) of people who are forced to move away from all that is familiar because of predictable, age-related changes including declining mobility or the onset of dementia. Thompson and Wright (2001) also observed that the moves of people with learning disabilities into residential services for older people were, in many cases, due to the death or illness of family carers, and that the person’s age and levels of disability might be far below the threshold for other disabled people (DoH, 2001; Scottish Executive, 2000).
Recent research (Bland et al, 2003) which explored the quality of services for people with learning disabilities found a complex relationship between quality and cost in residential services for older people. Staff working in services for older people believed that older people with learning disabilities would have a better quality of life in learning disability services. These concerns are mainly to do with length of stay, the training needs of staff, lack of activities and opportunities for older people with learning disabilities, and difficulties in integration.
Foremost of these concerns, as the Growing Older with Learning Disability (GOLD) project argues, is the ‘misplacement’ of people with learning disabilities in care homes for older people (Thompson & Wright, 2001). As noted above, people with learning disabilities have often been moved to older people’s residential services, not because of their own age-related disabilities, but for different and questionable reasons. Hospital closure resulted in direct ‘resettlement’ of many people in older people’s services. Examples were found in the GOLD research, and there were also instances where later re-organisation of community facilities had led directly to people being ‘passed over’ to older people’s services. It was not uncommon for people who were moved in these circumstances to be much younger than the other residents.
Because many older people with learning disabilities are relatively young when they enter older people’s services, they are more likely to reside in older people’s care homes for longer. This is particularly the case for individuals who are moved to care homes because of changes in their previous support networks, rather than because of their own disability. They have an unusually long experience of a way of life mostly reserved for the final stages of people’s lives. Recent research highlights the limited choices that people with learning disabilities who develop dementia have about their support (Stalker & Hunter, 1999; Wilkinson et al, 2003).
Service providers also appear to find this state of affairs problematic. Care homes often have trouble with recruiting and retaining staff, and struggle to meet targets for training. Meeting standards for the care of people with learning disabilities creates further challenges if a home is used primarily to support very elderly people. It is not clear what the best training is for staff, if they are to meet the inter-related, and often complex, needs of older people with learning disabilities. Experience may be limited, and links with learning disability services to gain support may be underdeveloped.
The future for workforce planning
Commissioning services to meet the individual needs of people with learning disabilities as they grow older is a key task for partnership boards, and should include attention to the workforce supporting older people with learning disabilities. In this section, we focus on people with learning disabilities who develop dementia, as an illustration of the potential for building common ground between learning disability and older people’s practitioners.
Wilkinson and Janicki (2002) observe that several staffing issues require consideration, including specifying clear job descriptions for staff from different agencies (health and social care). Equally important is co-ordinating or building common platforms between different types of staff. Box 1, below, summarise what staff in each setting need to know about the speciality of the other, focusing on dementia rather than ageing in general. Similar discussions could be held about other long-term conditions such as diabetes or coronary heart disease.
As with other mental health problems in people with learning disabilities, and in older people in general, it can be very difficult to make a diagnosis of dementia. This is particularly true if people do not know the person well. Currently there is no standardised single assessment process to identify the onset of dementia among people with learning disabilities (Whitehouse et al, 2000). Recognition of dementia, followed by provision of adequate support, relies mainly on family and staff observations (Oliver, 1999; Deb, 2003).
Typically, it is difficult to know whether someone has lost previous skills if no-one is familiar with the skills that they had previously. On the other hand, changes in people with learning disabilities, especially those with Down’s Syndrome, can too easily be attributed to dementia without investigation of other possible causes. There are, then, several different tasks. The first is knowledge acquisition. People who support older people with learning disabilities, whether social workers, social care, health or housing staff, or family carers, need to know more about the following.
* Ageing, dementia and learning disabilities health-related needs. While many will know, some may need to be told about the possible signs of early onset of dementia and what to do if they are suspected. Their knowledge of the person will help to construct a history that medical professionals will be able to use in distinguishing between such signs and other non-dementia problems. They will also be able to transfer, or at least record, their knowledge about any communication difficulties the person they support has, and to suggest the most effective communiaition methods to other professionals.
* Training and understanding will enable them to plan and anticipate changes when supporting people with learning disabilities, and will help prevent crisis or make it possible to respond to it with some prior thought and strategies.
* Everyone needs to know whom to contact and how to seek additional support for themselves and service users (for example through advocacy networks).
* Likewise, everyone needs to know when and how to communicate with other services, especially community and voluntary groups.
Both learning disability services staff and dementia support staff are expected to support older people with learning disabilities with dementia at different, and sometimes similar, points of time. Box 2, below, summarises what dementia staff may need to know in order to offer advice or support and when taking on responsibilities for service planning or provision. Other tasks will relate to collaboration or integration around specific care settings and specific issues. Advocacy services, for example, may be specific to a ‘client group’ but have much to learn from each other.
People with learning disabilities from ethnic minority groups may be more vulnerable to social exclusion and face a wider set of barriers to accessing services. Research indicates that older people from ethnic minority groups who develop dementia find that some services are inappropriate and hard to access (Boneham et al, 1997; Patel et al, 1998; Bowes & Wilkinson, 2003). From the USA, there is evidence that people with learning disabilities from ethnic minorities who develop dementia may face even higher obstacles and have more unmet needs (Janicki, 2001). Service providers need to consider how to make services more accessible to older people with learning disabilities from ethnic minorities. Understanding and appreciating the impact of social, cultural and environmental factors are important in recognising signs of dementia and catering for subsequent needs.
Overall, research on the particular needs of people with learning disabilities who develop dementia is limited in the UK (Mental Health Foundation, 2002; Wilkinson et al, 2003). Examples of good practice are still to be developed and tested. This means that support staff need to collaborate with older people with learning disabilities and their carers to develop culturally sensitive interventions and support systems for all citizens.
Ways forward – service dialogue
Wilkinson and her colleagues’ (2003) recent study of dementia and learning disability services has brought new service demands on to the agenda. They make the case for services to employ more night staff, for practitioners to develop experience in communicating with other service users that a person is developing dementia, and for services to provide support to staff. Such findings confirm the need for a workforce that is flexible, that can work with individuals, with groups, with older people and with people who are growing older, and that will work best if it is itself respected and valued.
Integrated services have the potential to make the most of staff by acknowledging and building on their transferable experience and expertise. Currently integration is generally seen as cross-sector (health and social care). The needs of people with learning disabilities who develop dementia suggest that integrated services can also be a way of making the most of experience and expertise within each sector, such as that held by specialist learning disability practitioners and by specialist dementia support staff. In the absence of integration, greater dialogue within services and between practitioners may be valuable. In this way, we may help to avoid one-way valves between services and settings, and develop skills and experience among practitioners.
Box 3, below, presents possible outcomes of training, networking and shared care between sectors and local community services with their different practitioners. Support staff may be able to plan better and thus prevent unnecessary crises. They should be able to anticipate changes and be more confident in responding to them or knowing whom to ask for advice. Such outcomes need to be evaluated through participatory research where possible.
This article has focused on dementia as an example of a disability that may present particular challenges to services supporting the growing number of older people with learning disabilities. It has suggested that front-line practice may be enriched if practitioners learn more of each other’s skills, experience, networks and knowledge. A suggested set of outcomes has been established here which needs to be debated with people with learning disabilities, their families and other supports. Evidence now exists that researchers and services recognise this area as one where closer working together may have many benefits for individuals and practitioners alike.
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