sailor girlDown's Syndrome Adulthood and Aging

People with DS today are living healthier and longer lives than ever before.  A baby born with DS in the 1950's would have had a life expectancy of about fifteen years.   Since then, improvements in medical care, typically developments in antibiotics and heart surgery, have meant that individuals often live well in to their fifties and sixties.

Naturally, this great increase in life expectancy makes meeting the needs of older people with DS increasingly important for families and all others concerned.

Friendships and relationships are important in everyone's life.  Having friends makes feelings of loneliness and isolation less likely.

In the past, people with DS were rarely taught about sex or given any opportunity to express their feelings.  People with DS need to be educated about sex, and about sexually transmitted diseases and contraception.  Most importantly, they must learn what is appropriate and acceptable behaviour.

Some individuals with DS do marry, often another person with a learning disability.   Where the marriage is based on a caring and stable relationship, and where the couple have appropriate support, there is every chance of success and happiness.

Most individuals with DS are not fertile, but some women can have children, and there are rare cases where a man with DS has fathered a child

People with learning disabilities have the same human rights as everyone else.  This means a right to vote; access to education and training; access to proper housing and medical care; and above all, the right to be treated with dignity and respect.

Remember your own needs.  Caring for someone with dementia is hard work, and can be stressful.  You will be able to remain more actively supportive in the long term if you look after yourself.

From fourteen years onwards, young people with learning disabilities and their parents are involved, along with school staff, in the Future Needs assessment process.

On leaving school, there will be several options open to a young person with DS.   Access to the various services for adults is through the Social Work Department, with social workers assessing individual needs.

Unfortunately, employment opportunities for adults with learning disabilities are still limited, and there is a need for more supported employment schemes.  Work experience is organised through some day centres, family and local links, and voluntary organisations.

In the past, people with learning disabilities tended to live either at home with their parents or in large institutions.   The institutions are now closing down.   Many people with DS do live with their families, but many also wish for greater independence early on, while others have to find a new home as their parents grow older.

Being Flexible

The idea behind recent Community Care legislation is to provide support so that people with learning disabilities can live, where possible, in their own homes within the community.  Usually, the individual's benefit income is used to pay for accommodation and food, with something left for personal needs.

For parents - "letting go"

Encouraging independence and "letting go" is a challenge for all parents.   It can be especially hard for parents of young people with DS.

All parents wish to protect their children from danger and rejection.  But some risks have to be taken to allow children to develop self confidence.  Young people need to be aware of possible dangers, but they must also be trusted and allowed to learn from their own mistakes.

If something is starting to be a problem, it's worth keeping records over time, noting when and where changes of behaviour are taking place, in case there is a pattern. "John wasn't sleeping properly, which was hard all round.   He'd be upset and confused at night, and we all ended up tired.  So we stopped the afternoon nap John had been enjoying for years.  We go for a stroll round instead, for some exercise.  It's working.  The night problems have stopped and we're all better for it." It helps individuals to maintain self-respect, and dignity, if they can continue to look after themselves for as long as possible.  Caregivers can encourage this in many ways:

Accepting change
If a routine is working, stick with it.  If it isn't be prepared to change.

As the disease progresses, the best ways of caring for an individual will change.  What was helpful before may no longer be appropriate, and new approaches should be tried: "James used to love to party, and be at the centre of things.  Alzheimer's is changing him, and we just have to accept that.  He finds company stressful now.  He's far more relaxed with just one or two others..."

Offering help
Offer help with tasks the individual used to manage independently, but now finds difficult.  For example, you can set clothes out in the order they are to be put on.  Similar sequences can be worked out for bathing, toileting., and so on.    Offer prompts, but try not to take over, even if that would be quicker.   Encouraging independence helps maintain skills and self respect.

Using prompts and clues
Give prompts and clues as to the time of day, day of the week and so on.   Make them part of the conversation;  "It's  eleven o'clock, should we have a coffee?".  This helps anyone who is finding it hard to keep track of time.

Written or picture prompts can help as reminders of how to carry out activities such as using a washing machine or telephone.

Reducing stress
Keep stress to a minimum.  Individuals are less likely to suffer from stress when they have some control over their lives and know what's going an around them.

On the other hand, experience of failure can be frustrating and stressful.  To maintain dignity and self-esteem, a balance has to be found between protecting a person from too much failure, whilst at the same time encouraging all possible independence.

Offering choices
Choices should be offered where practical; about where to live, what to wear, when to go out, what to eat, and so on.  This adds to feelings of control rather than helplessness.

Making yourself understood
If there are problems with communication, you can make yourself understood in a number of ways.  While you are speaking, slow down and use shorter, less complicated phrases.  This can still be friendly and informative.

Non-verbal communication is valuable too.  Keep good eye contact, and use gesture to back up what you are saying.  Holding a person's hand or giving them a hug can make the message clear.

Listen carefully.  Make time for the person's responses, and try to follow his or her own interests and leads in your conversation.

Some days will be worse than others as skills can come and go.   If the person you care for is unable one day to do something she could do the day before, don't panic - view it as a bad day.  They may be able to do it again tomorrow.

Remembering general health
Someone with Alzheimer's disease can become ill in other ways, just like anyone else.  If there is a sudden deterioration, it's important for the GP and others to consider possible causes, other than progression of the dementia.    Ability and behaviour can be affected by, for example, chest infection, urinary tract infection, or toothache.

If depression occurs, it should still be treated, even if dementia is present.   Hearing and vision continue to be important, and should be monitored regularly.  


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