Older Family Carers:

Why are they and their adult sons and daughters with learning disabilities a priority?

One simple answer would have to be; there are so many of them! People are living longer; both people with learning disabilities and their family carers.

• It is estimated that between 60% and 83% of people with learning disabilities
  live in the community, the majority of them supported by their families. The
  proportion of people being supported in the family home has not changed
  since 1969. ('Valuing People', DoH. 2001.)

• A significant number of family carers (estimated about a third) are now over
  70 and many of them are caring on their own. Significant numbers of people
  with learning disabilities are being supported by carers in their 70's, 80's and
  even 90's.

• Yet, many of these families are not known to services. Research in the UK, US
  and Australia suggests that up to 25% of people with learning disabilities are
  not known to the local learning disability services until their family care
  situation breaks down, due to the ill health or death of their main carer.
  ('Family Matters', DoH. 2001)

• Significant numbers of middle aged men and women with learning disabilities
  will need to be supported when their parents can no longer care for them.
  With increasing longevity this post-parental care phase could be upward of
  twenty years for many men and women with a learning disability. Planning
  for this phase is essential. ('Moving On Without Parents', Bigby C. 2000.)

Although older carers share many characteristics with their younger counterparts, there are also important differences that have an impact on their need for services and support.

• Growing older together: they are continuing to care and getting older at the s a me time. Their needs as older people are often not recognised or catered for.

• Isolation and limited support: they are more likely to have reduced networks as spouse and friends die. They are more likely to be caring alone.

• Mutual interdependence: the relationship with their son or daughter is very important and this can develop into mutual dependency and very strong bonds. Many son and daughters take on an increasing number of caring roles for their parents. This is usually not recognised or supported.

• Different experiences and expectations of services: They have different experiences of services and the professionals in them than younger families. Their children were born at a time when there were limited opportunities for people with learning disabilities. Many families have had to battle for the most basic services for their sons and daughters, including education and day services.

• Independent and going it alone: They are less likely to ask for help just at the time that they might need more. Many families have had bad experiences with services in the past and have little or no confidence in what they have to offer.

• Negative experiences of services: These lifelong carers have often feel they have had a particularly bad deal from services. They feel judged and devalued by staff in services.

• Facing Discrimination: Research has demonstrated that those people with learning disabilities known to services who live with older family carers experience discrimination. They are less likely to receive a service or have an individualised support plan, compared to other people with learning disabilities. ('Fair Shares For All', Walker C. & Walker A. 1995.)

Older family carers stress that it is important to them that the support they have given their son or daughter is recognised and valued by services and the staff that work in them. In the report, 'A Crisis Approaching' the concerns of older family carers were documented. Six key points emerged as important for older family carers:

• To be known by services and have regular contact to both assist with the planning and enable assistance and support to be sought when necessary.

• Provision of information regarding local services for both short and long term.

• To ensure older people services and services for people with learning disabilities are linked and co-ordinated, and there is a central contact place for information and help.

• A non-judgemental approach by workers and awareness by them of the pressures experienced by parents and an appreciation of their expertise.

• Reassurance that help will be available in a crisis, that their dependent will be cared for and have support to deal with loss and bereavement.

• Involvement in planning, assessment, and decision-making processes regarding their son or daughter.

• Despite a growing recognition of the key issues there has been limited development of practice wisdom here in the UK.

• Of the 146 Local Authorities contacted as part of the Lifetime of Caring project only 45 responded. Of these only a few areas had begun to develop a strategic or comprehensive approach to supporting this group. Many authorities had identified the issue as an area of concern but had not yet developed a response.

• The seminal report "Uncertain Futures" (Walker and Walker 1998) urges Local Authorities to think strategically. Suggesting the local authorities need to give high priority to developing information systems that can help identify older family carers and create a useful database to assist service planning.

• They emphasise the fact that Local Authorities cannot rely on existing care management systems as so many of these families are not known to services and the triggers for assessment of need are not operating effectively.

• Mainstream carers initiatives cannot be relied on to provide the targeted support these families need. Research published by the Norah Fry Centre, "In Their Own Right" (Robinson V. & Williams C. 1999.), showed how poorly served family carers of people with learning disabilities are. The majority of families were not accessing their right to a statutory assessment under Carers legislation. Those few that did experienced no discernible change in their support a year later.