Asking for help

"We're managing fine at the moment.  It's more for the future.  We won't have to go looking in a hurry.  It helps us all to know the support is there, for when we do need it."

Don't try to manage alone.  Talking with other relatives and care workers can help.  They may well be aware of changes and be concerned too.

It can be useful to explain what is happening to neighbours, other residents in supported accommodation, relatives and friends.  If they are kept informed, they will be able to offer the support they would want to.

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.

The person with dementia  and his or her caregivers will all need help at some stage.   It's useful to make the necessary contacts early on, to get professional advice, and to establish what support services will be available. "I'd like the staff to get a sense of him now, as he really is - so they know him as a person.  I don't want to leave it until he's unwell and I'm not coping"

The care needs surrounding a person with dementia will increase as the disease progresses.  Early on, services such as the day centres or day hospitals may be able to adapt their services to provide the support needed by an individual and his or her caregivers.

Projects set up to help older people with dementia might be able to help.   Depending on where you live, support may also be available from Community Nursing and Community Learning Disability Teams.  Later, as the illness progresses, more support will be needed.  A level of care may be required that cannot be provided form home, even with domicilary support services.  A move into residential care can become the best thing for all concerned. "We couldn't cope with Paul at home any more.  Nursing him all day and night was making us ill too.  I'd always dreaded him going into a home but now it's happened it's all right.  Trained staff are on hand for him all the time - 24 hours a day.  No-one has shut me out, I'm still his mother, and very much involved." Being Flexible

Having an established, predictable pattern to the day is helpful, but the routine should be changed if it isn't working.

Fitting in with a routine should not dictate how a person is cared for.  At home, flexibility often comes naturally.  If someone can't make it one day to their usual centre, or can't have lunch at the usual time, that can be worked round.  People in residential settings have an equal need for such flexibility.   There is no "golden rule" that suits everyone.

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.  

Next

Back to the Downs Directory