Transitions facing families growing older together

There are three major transitions facing older family carers and their adult children with learning disabilities.

These include;

• Growing older together - Recognising mutual interdependence.
• Planning for the future - For a time when parents are to old to continue to care
• The post parental care phase - When the person with learning disabilities no longer lives with their parents.

What are the practical implications of these transitions?

Services have to acknowledge that as people grow older together the importance of taking a dual or family focus is vital. Support has to be targeted to both the carer and the person with learning disabilities.

This has implications for the way that different services work together, particularly older people’s services and learning disability services. The clarity about who is the cared for and who is the carer becomes less clear, as potentially both are eligible for community care services in their own right. Both also potentially become eligible for support services as a carer.

Both might need support from independent advocacy or carers services to ensure that all perspectives or points of view are taken into account.

1 Growing older together

If we look at the demographic profile of the population of people with learning disabilities across all ages, there is a bulge of people in the middle age ranges sometimes referred to a the 'baby boom' generation. The majority of these men and women with learning disabilities live in the community supported by family carers who are in their 70's, 80's and even 90's. (Family Matters [DoH - 2000])

In general, the UK is an ageing society. People are living longer and life expectancy is increasing for us all. If we look at the population of people with learning disabilities there is a marked increase in people’s longevity and many more people are living into old age.

There are two implications of these trends.

• One is the significant numbers of people with learning disabilities who are currently being supported by older family carers.

• The second is that more and more people with learning disabilities are likely to outlive their parents and spend upwards of 20 years in what one writer has called, 'the post parental care phase'. (Bigby - 2000)

Developing an understanding of the ageing process is therefore an important part of supporting older family carers and their middle-aged sons and daughters.

There are three dimensions to the ageing process;

• Physical
• Emotional
• Social

Remember, that for each person the ageing process will be different. But some physical changes associated with ageing will be common and include some of the following:

• Muscle loss
• Increase in body fat
• Changes in vision
• Changes in hearing
• Hormonal changes
• Reduced immunity slowing down of the gastrointestinal system
• Changes in the body’s sensitivity to temperature
• Shrinking gums
• Bladder changes
• Reduced heart muscle strength
• Changing sleep patterns
• Changes to the feet

All things people will need to adjust to.

As people age their vulnerability to certain illnesses like cancer, dementia, heart disease, arthritis and strokes increases. (For a fuller discussion of the health related risks of ageing, see the National Service Framework for Older People 2001 - DoH.) It is recommended that all people over 75 have an annual health check with their GP. Older carers might need to be supported to do this.

Alongside these physical changes, many older people become more socially isolated as
their networks of friends and family gets smaller. What Alec Guiness, the actor,
referred to in his autobiography, as his 'ever diminishing circle of friends', as a result
of so many people dying. For many people, retirement from work can be a difficult
time and can reinforce isolation if alternative activities and networks do not take its
place.

A combination of these social changes and the increased vulnerability to ill health
mean that old age can be a very challenging and difficult time for some people. Just at
a time when their support networks are likely to be getting smaller. No wonder
Janicki highlighted the important role services should play in constructively improving
lifestyles and minimising the restrictions imposed by growing old.

Implications of growing old together.

It needs to be recognised that for some people with learning disabilities, (in particular people with Downs Syndrome in middle age) there is a vulnerability to specific health problems. This means that at the same time that their parents become vulnerable to certain health problems, potentially so do they. For example, it is estimated that people over the age of 85 have a 1 in 4 chance of developing dementia. Research shows that for people with Downs Syndrome, that age related risk is bought forward by 40 years.

Another implication of growing older together, as we have already discussed, is the fact that as carers become frailer, their son or daughter with learning disabilities can play an increasing role in the support of their parents. "He will finish up caring for me", one mother told researchers from Bristol. ('He Will Finish Up Caring For Me', Robinson V. & Williams C. 2001.)

Another implication is that the lifestyle of the person with a learning disability can become unduly restricted by the fact that they are living with a person older than themselves, and are forced into a prematurely more restricted lifestyle. Some carers have said to the social services that they worry about people "getting old before their time".