People with Learning disabilities- AN ageing population

Just like everyone else people with learning disabilities (pwld) are living longer. This means that there are new considerations to be made by professionals and services working to support them. However it is also important to remember that pwld are a broad group of people with differing abilities and needs and therefore there are many different issues that need to be considered. These considerations are a challenge which as a society we are only just beginning to wake up and respond to despite having known that this situation was approaching for a decade or more. In this article I will probably raise more questions than I will answer, but recognising the issues is the first step towards making a response.

 

 

 

People with learning disabilities cover a whole range of abilities, disabilities and life experience. Some people will have spent most of their lives in long stay institutions, some are living with ageing family members (having lived at home all of their lives), some are living in residential services of various sorts and some are living independently. So it is important when we refer to older pwld to keep in mind that we are referring to a broad range of people.

 

 

 

Older pwld living now will be the generation that 50 or more years ago would have been born into families who had very little in the way of choice or sense of future for their child. Most of these families would have been told that the best thing to do was to put their child in an institution, forget them and get on with their lives, this was the fate for many people, some families did their best to keep in touch, for other people they never saw their families again.

 

 

 

Some families fought to keep their disabled child at home with them these families experienced statutory services negatively often with good reason and avoided contact with services making it difficult to this day to know how many older people with learning disabilities there are living with family members.

 

 

 

The white paper ‘Valuing People’ estimates that at least 25% of people living with family carers over the age of 70 are not in contact with services.

 

 

 

These families are often suspicious of help, some not even accessing the GP for their Learning Disabled adult child except in extreme emergencies. They are often accustomed to managing without any support such as respite care and are often suspicious of any attempts by professionals to offer their services or advice. (Wandsworth Rathbone - Looking Forward Survey)

 

 

 

People with learning disabilities used to not live as long as the general population but with advances in health care and healthier lifestyles this is no longer the case. However because of this many older parents have lived their lives believing that their son or daughter would die before them, this has often left families without plans for the future. It can be difficult to consider the future when there is no trust that services can provide anything like ‘good enough’ care. It is often the fear of neglect or abuse of a more active sort that continues to keep families in fear of using services. (The HCC reports from Cornwall (2006) and Sutton and Merton (2007) sadly only reinforce this).

 

 

 

The dynamics between older parents and their adult learning disabled child and siblings are often complex. The nature of managing for decades in often very difficult situations and in isolation can lead to intricate co-dependent relationships. These family units are often entwined and supporting one another in a range of different ways, it is important to note that increasing numbers of people with learning disabilities are carers themselves for older parent or siblings although this is rarely formally recognised.(Walker and Walker 1998)

 

 

 

It is often not until a crisis point is reached, such as a parent or sibling dying or becoming too frail to continue living in the family home that these families become visible. This often results in the older person with learning disabilities leaving the family home for the first time with no preparation and often at a time when they are grieving which is likely to lead to all sorts of emotional complications (Oswin1991, Blackman 2003). What can be done to change this situation?

 

 

 

There is an urgent need to find such families early on, build up trust and work in partnership with them, offering choices for the future, support in planning and also emotional support with all that this will bring up for the whole family.

 

 

 

Older families will become visible to different services at different times and for different reasons. Whenever they come forward for any kind of support – e.g. GP, home help, district nurse (Magril 2005). It is these professionals who need to receive education and information in order that they are able to see the fuller picture and recognise the needs and struggles of these families who will often not make their needs known. These professionals are in a position to offer signposts to other services and can help families find the support that they might need. These pathways can only be created through good clear communication, co-ordination and effective partnership working across the service boundaries that exist between older people’s services, learning disability services, generic carers’ services as well as primary and acute health services. All of these agencies have a responsibility to consider and respond to the needs of older families as a whole.

 

 

 

 

 

 

A neglectful society

 

Although as a society today we may seem to have moved forward towards being more caring and inclusive there is still an underlying unconscious attitude, which excludes, isolates and ignores the needs of people with learning disabilities, we know also that society marginalises older people, therefore to be an older person with a learning disability is a double disadvantage.

 

 

 

It is well documented that pwld get second rate health care (Mencap 2004 & 2007,Disability Rights Commision 2006, ) and we know as people get older they are more likely to experience worse health and eventually a high proportion of this population will contract a terminal illnesses such as respiratory disease or cancer this is statistically more likely the longer that a person lives. People with these types of illnesses i.e. those with a long dying phase should ideally be offered Palliative care. The World Health Organisation defines Palliative care as:

 

 

 

…. The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. (WHO 2002)

 

 

 

 

 

 

 However it is known that Palliative care is not often accessed by older people in care settings (Addington Hall & Higginson 2001) or pwld (Hogg, Northfield and Turnbull)

 

 

 

 

 

 

Another important health issue for older people is Dementia, although only a small percentage of older people will develop dementing symptoms (1% age 60 yrs within the general population), this percentage then doubles approximately every 5 years beyond the age of 60 (Stuart-Hamilton 2006) so the longer a person lives the higher their chances are of developing this disease. However the situation is slightly different amongst the ageing learning disabled population as people with Downs syndrome are prone to early onset Dementia (from about 50 years although some people have been far younger), this is thought to be due to the extra x chromosome (Kerr & Wilkinson 2005). Historically it has been extremely difficult within mainstream palliative care to access services for people with dementia, although on a positive note this is beginning very slowly to change.  

 

 

 

 

 

 

It is well documented that for people with learning disabilities many illnesses are diagnosed later than the general population (Mencap 2004 & 2007, DRC 2006), this often means that there are fewer treatment options available, there are many reasons for this, such as lack of health care screening, difficulty communicating in a way that others understand, lack of training amongst health and LD professionals etc. However there is a more concerning reason for this as well, which is to do with assumptions regarding quality of life, ability to consent and ability to withstand treatment made by professionals that result in pwld not getting the range of options regarding treatment that others get. The Mental Capacity Act which comes into force this year should enable more challenges to be made towards these attitudes. Underlying these attitudes is an astonishing lack of knowledge within the medical profession and also amongst learning disability professionals and direct care staff, for example it is common for people with Downs syndrome to be diagnosed very late with Dementia even though it is now well known that they are prone to the early onset of this disease, because many GPs and learning disability care workers are still ignorant of this fact and also because the noticeable early symptoms can be different to that of the general population and therefore are not so easily noticed without specific training.

 

 

 

 

 

 

When pwld were offered care in the community they were promised ‘homes for life’ however many of these homes were not planned with ageing in mind. Many homes are in small houses and span several floors, as people become less mobile these are no longer appropriate. Staff are often also untrained and are unsupported to care for people with greater health needs, this can result in people being moved in a crisis with little planning, to services which are ill equipped to respond to their specific needs. They may lose touch with everyone who knew them and with this often lose their history and sense of self; many people end up in generic older people’s services which are not appropriate.

 

 

 

Generic older people’s services often have no knowledge of supporting pwld and therefore people become marginalised within an already marginalised service. Also many older pwld have no family to advocate for them in the way that families do for many other older people within these kinds of services.

 

 

 

Case study

 

Annie is 78 years old, she has a moderate learning disability. Eight years ago she was living independently in her own supported flat; she attended a day centre and a college and had a full social life. One day Annie fell when she was alone in her flat, she was shaken and so were the services which provided her support. The decision was taken shortly after this that Annie should no longer live on her own. She was moved into a generic service for older people. She stopped going to the day centre and also stopped going to college, the main reason for this seemed to be that it was not the culture in the residential service for people to go out and that because of this there were not enough staff to support people to get out. Most of the other people living in the service were far older and frailer than Annie and led very uneventful sedentary lives, this did not suit Annie and she complained bitterly about the boredom. Annie stayed in this service for the next 4 years, her health and her ability slowly deteriorated during this time and unfortunately it eventually became clear that she was showing signs of dementia. Annie was then moved into an assessment unit where she stayed for some months, from there she was eventually moved on to a specialist dementia unit. Although this was supposedly a specialist unit the staff seemed to have little training in the specific needs of someone with dementia, so for example it was very difficult to get them to understand that it would be important to get curtains that properly fitted the windows in order to keep the room dark at night as this would help Annie to differentiate between night and day and would help her to sleep at night; the ones she had were about six inches too short and clearly demonstrated the value attached to the residents. Annie stayed in this unit for less than a year until her needs changed as she became less and less mobile and at this point she was moved on again into a nursing home. During each of the three moves described above Annie lost some of her possessions until by the time she ended up in the nursing home she had virtually nothing left. When Annie first moved from her flat into the older people’s service she had a room which was full of the art work that she had created over the years (Annie was a fine painter), she also had many trinkets and photos from her sisters who kept in regular contact although they lived some distance away. Annie was also fond of clothes and had her own unique style of dressing in often very colourful clothes, she preferred dresses and skirts to trousers and would rarely go out without a hat, she had a wardrobe full of clothes. Now she was often found in other people’s clothes and wearing jogging trousers for the convenience of the staff.

 

 

 

We often define ourselves through the things we surround ourselves with and the clothes we wear, there was something depersonalising in the loss of Annie’s possessions as though as she sunk further and further into dementia the services saw her less and less as the individual that she once was and were unable to pass on any remnants of her former self to the next service. During this time Annie became increasingly isolated, her sisters themselves were elderly and unable to visit, her friends and the staff she knew from college and day centre no longer in touch, few people from her life before

 

 

 

dementia still had contact with her. Luckily for Annie she had a friend who had remained in contact after he had worked with her for a number of years, he struggled on her behalf to ensure that she didn’t spend all day and every day in bed. Through his persistence Annie was eventually assessed by an occupational therapist for a properly supportive wheelchair, she eventually received this although this was over six months later. This meant that once a new coat, hat and shoes had been brought she could be taken out of the nursing home to enjoy outings to a local coffee shop or visits to old friends. He was also able to ensure that she was given enough fluid as Annie is no longer aware of these important fundamental needs herself, and yet all of these simple needs contribute to a meaningful existence and possibly even to life itself.

 

 

 

 

 

 

Older people with learning disabilities who live independently.

 

 

 

Many older pwld who are living independently are very vulnerable. In many ways this is similar to other older people who live alone, issues such as being vulnerable to financial abuse may be the same for both groups of older people but there are several reasons why older people with learning disabilities may be even more vulnerable.

 

 

 

Many other older people have children who may keep an eye on how things are and who notice if things become more difficult, whereas many older people with learning disabilities have no children, they may have siblings who are getting older themselves and may find it difficult to maintain contact. Many older people are also a part of the community in which they live and may have several social connections with people who again would notice if there was deterioration or if help was needed, whereas often pwld living independently are very isolated

 

 

 

Many older people with learning disabilities can be slow to realise when they are unwell or when there has been some deterioration in their health and may also not know what action to take and have no-one to discuss their concerns with ( Tuffrey Wijne & Davies 2007). Many people who live independently slip out of the learning disability support services net and do not know how to get support when they need it. This is also exacerbated in some ways by the drive towards inclusion where it seems that many learning disability services are only providing for people with more severe learning disabilities, this often results in older people with mild learning disabilities being supported by Older People’s Adult Care Services and these teams are not always equipped with the appropriate skills and knowledge for meeting the needs of older people with people with learning disabilities.

 

 

 

 

 

 

 

 

 

Psychological issues

 

Bereavement has often gone unacknowledged and unsupported for pwld particularly when people move from the family due to the crisis of a parent dying (Oswin 1991, Blackman 2003). This type of bereavement is particularly complicated as there are often multiple losses and the person can be in a situation where they are suddenly surrounded by people who have not known them before the death and know nothing about them or their life history, for any of us having to make a new life and tell your story to people who don’t know you can be difficult for someone with a learning disability it is even harder, sometimes impossible.

 

 

 

Some people with learning disabilities can have difficulty enough making sense of the world around them, but this confusion is often added to by not being given important information for example when family members or peers become ill with dementia or another terminal illness, there is often little explanation or support to enable pwld to understand the worrying changes that they are witnessing and peers can be moved on with out warning or explanation being given or access to close family members suddenly cease as the illness takes hold.

 

 

 

People with learning disabilities often need support in order to maintain relationships with family, friends and other intimate relationships, but services do not often prioritise this as a need and it is not seen as important, yet it is well known that close relationships are important for people’s psychological well being. This neglect can become more apparent as people age and either their family members become too frail to continue to visit or they die and the person can then become very isolated if other relationships are not supported.

 

 

 

It is often difficult for people to remember their own history, they may have little access to prompts such as photos and mementoes and the learning disability may make it difficult to remember things or to carry a sense of timescale or order. It is therefore extremely important for services and professionals to encourage reminiscence and life story work and to see the importance of supporting people with learning disabilities to maintain current relationships with people who are important to them.

 

 

 

What can we do?

 

Developing a national central coordinated approach towards older families and pwld, that works across the professional boundaries of Health, Social Services and Housing would enable all services and the professionals within them to notice older pwld and their families when they crop up in different contexts and signpost them to relevant services.

 

 

 

Learning Disability services need to prioritise supporting people to maintain key relationships.

 

 

 

Specific and appropriate training regarding the issues raised in this article need to be targeted at: Generic health care staff in hospitals, GPs, Palliative care teams, Care staff in learning disability services, Learning disability community teams, Generic older people’s services and Bereavement services. TThere is ahere is also a need for further research and campaigning.

 

 

 

 

 

 

 

References

 

 

 

 

 

 

• Addington-Hall,J. and Higginson, I. (2001) Palliative Care for Non- Cancer Patients. Oxford UK. Oxford University Press.

   

• Blackman, N (2003) Loss and Learning Disability. London. UK: Worth Publishing

   

• Disability Rights Commission (2006) Mind the Gap. Stratford Upon Avon. UK

   

• Health Care Commission (2006). Investigation into services for people with learning disabilities at Cornwall Partnership NHS Trust -

   

• Health Care Commission (2007). Investigation into services for people with learning disabilities at Sutton & Merton Primary Care Trust

   

• Hogg, J., Northfield, J. & Turnbull, J. (2001). Cancer and people with learning disabilities: Part 1: The evidence from published studies; Part 2: Experiences from cancer services. Kidderminster: British Institute of Learning Disabilities (Report prepared for the Department of Health, England

   

• Kerr, D and Wilkinson, H. (2005) In the Know, Implementing Good Practice: Information and tools for anyone supporting people with a learning disability and dementia. Brighton. UK: Joseph Rowntree Foundation and Pavilion.

   

• Magrill. D. (2005) Supporting older families: making a real difference. London UK: Foundation for People with Learning Disabilities.

   

• Mencap. 2004. Treat me Right. London UK.

   

• Mencap. 2007. Death by indifference. London UK.

   

• Oswin, M. (1991) Am I Allowed To Cry? A Study of Bereavement Among People Who Have Learning Disabilities. London UK: Souvenir

   

• Stuart-Hamilton, S.(2006) The Psychology of Ageing. An Introduction (4^th edition). London. UK: Jessica Kingsley Publishers

   

• Tuffrey-Wijne, I. & Davies, J. (2007) This is my story: I've got cancer. 'The Veronica Project': an ethnographic study of the experience of people with learning disabilities who have cancer. British Journal of Learning Disabilities 35(1), 7-11.

   

• Walker, C. and Walker, A. (1998) Uncertain Futures: People with Learning Difficulties and their Ageing Family Carers. Brighton: Pavilion Publishing and York: Joseph Rowntree Foundation.

   

• Wandsworth Rathbone Looking Forward Survey as cited in today and tomorrow (2002) – The Report of the Growing Older with Learning Disabilities Programme by the Foundation for People with Learning Disabilities.

   

• World Health Organisation (2001) WHO website – www.who.int