People with dementia may feel confused and anxious and in need of reassurance. They may also have some important decisions to make, including:
- How and when to tell family and friends of the diagnosis
- Whether to carry on working
- When to stop driving
- How they would like to be cared for, now and in the future
There may also be joint decisions you both need to make – about money, for example.
Try to talk to the person you are caring for, offering as much emotional support as you can. The person may want to involve you in such decision-making.
Having a diagnosis usually raises as many questions as it answers. What will happen in the future? What can be done to help? Why has this happened? Will other members of the family develop the same problems?
Don’t be afraid to ask – your GP or specialist is a good place to start, or contact your local branch of Alzheimer’s South Africa. You could also contact the Alzheimer’s helpline on 0860 102 681. Having a name for the person’s problems can be helpful, but you will need as much information as possible if you want to plan for the future.
What can be done at this stage?
You and the person with dementia may want to think about the following issues:
- Are there any treatments available that will help the person’s dementia or treat other conditions that have been identified? If the person has vascular dementia, what can be done to prevent further damage? Discussion of these issues with the specialist is an important follow-up to the diagnosis.
- You may want to think about your medical support in the future. Does the specialist or the clinic provide a follow-up service or only the assessment? A good working relationship with the doctor is invaluable.
- Some families also discuss people’s preferences about their future care, at this stage. Do they want to be cared for in a home, for example? This sort of discussion is often put off, but may be of great value when openly and honestly talked through.
- Persons with dementia may wish to write down their wishes regarding their treatment and care in the future, when they may not be able to communicate their wishes. This document, commonly referred to as a living will, may not be used as a legal document. It serves as a guideline for the carer and family when the time comes for decisions to be made concerning the person with dementia, so that his or her wishes can be taken into consideration.
- Are there financial matters that need to be discussed and sorted out? A Power of Attorney may be obtained whilst the person with dementia is ‘of sound mind’. Once the person is unable to handle his or her affairs, because of the dementia, the Power of Attorney becomes invalid and other options need to be considered.
- You might like to find out now what other practical support and advice is available in your area for both you and the person with dementia. It makes sense to try to arrange help before a crisis occurs. More
Especially in the early stages, there ’s a lot you can do to help the person you are caring for, to stay independent.
It may be tempting to do things for people with dementia, but they are more likely to feel confident and to retain a sense of self-worth if they are given the chance to do things for themselves, with appropriate support if necessary.
There are ways of making everyday tasks a little easier for the person with dementia.
- Encourage the person you are caring for to divide tasks and activities into manageable chunks. You might think about writing down some instructions.
- Learn to be patient. Things may not get done quickly or perfectly first time round.
There are many practical ways to help the person deal with memory problems. Memory aids work by gently reminding the person of easily forgotten facts.
Try the following: –
- Putting a notice board for messages in an obvious place. You can use this to write notes, reminders that a visitor is coming or that a delivery is going to be made, for example
- Marking a calendar with the date, or getting an electronic calendar that automatically changes the day and date
- Encouraging the person you are caring for to keep a notebook or diary to write down important things such as appointments, people’s names, a list of things to do, any thoughts and ideas
- Pinning a weekly timetable to the wall, adding things to it as you think of them
- Keeping important things like money, keys and glasses in the same place
- Having a daily newspaper delivered – the date and day of the week are always on the front page
- Putting labels on cupboards or drawers to show where things are
- Placing helpful telephone numbers by the phone where you can see them
- Writing reminders to lock the door at night or put the rubbish out on a certain day, for example
- Putting a note on the door as a reminder to take his or her keys
- Labelling family photographs – those on display and those in albums
- Encouraging visitors (friends, family and professionals) to write the time and purpose of their visit in a book
(Source: Caring for the person with dementia – a handbook for families and other carers)
Older persons’ rights
http://www.saopf.org.za/charter.html is well worth visiting. The Older Persons Charter can be found there in Afrikaans, English, isiZulu, isiXhosa and Sesotho.
Talking things over
- You will need to discuss plans for the future with those closest to you.
- If your family and friends do not already know, try to tell them as soon as possible. They may not believe you at first, because they are so upset by the news. Try to discuss matters in a calm way.
- It helps if you can talk about your own wishes for the future, but do not ask people for promises that they may find hard to keep.
- It may help if you can find someone you can trust outside the family to talk about your feelings rather than bottling them up.
Putting your affairs in order
- Now is the time to make sure that any important documents such as your mortgage or rent agreement, insurance policies and bank statements are in order and can be found easily. Go through all the details with a relative or trusted friend.
- Sort out any recent bills, regular payments and business.
- Look at your will and make sure it expresses your wishes, or make a new will.
- Give your spouse or child a Power of Attorney to manage your affairs in your best interests, if you have not already done so. Note that the Power of Attorney is invalid once the principal is no longer fully capable of understanding it. For more information about legal options, please email email@example.com or phone our helpline.
- If you are still at work, you are probably finding it stressful. There may be an opportunity to change to a less demanding job or to decrease your hours. Whatever the situation, you will probably need to think about leaving work fairly soon.
- You will need expert advice on your pension rights, if a pension is due to you, and on the possibility of negotiating a lump sum payment.
- Before leaving work, check on benefits that you or your family may be entitled to.
- Look at what services are available. Even if you don’t need them now, they may be useful in the future. Those closest to you should not have to take on all the responsibility. They will need time to themselves.
- Find out from Alzheimer’s South Africa what services are available to you and your partner.
- Find out what kinds of services and local voluntary organisations or groups provide support.
- For those whose low income qualifies them, there is a state grant-in-aid for older citizens who need full-time attendance by another party, because of mental or physical disability. This grant is worth R250 pm. A social worker must assist the person or family to apply.
- It is important to take good care of your health. Having dementia does not mean you should feel ill so always check with your doctor if you are unwell.
- This is important as any illness can make you feel more confused and forgetful.
Try to eat balanced meals and take regular exercise.
- Discuss with your doctor the use of alcohol as it might make you more disoriented.
- If you are on medication, ask your doctor to check whether it is really necessary as some drugs can increase confusion.
- Poor vision or hearing or painful teeth, gums or dentures can make it more difficult for you to cope with what is going on. Regular eye, hearing and dental checks are important.
If you drive, you may have to give up doing so, either now or in the near future. You should also check with your insurance company to see whether you are still covered. More on the subject of driving.
Don’t be afraid to ask questions or say that you have not understood or have forgotten what has been said. It is not your fault if you can’t remember as well as you used to. Look for ways to aid your memory by:
- Placing helpful telephone numbers by the phone.
- Putting labels on cupboards or drawers to remind you where things are.
- Writing reminders for yourself to lock the door at night or put out the rubbish on Wednesday, for example.
- Putting things you use frequently, such as your keys or glasses, in an obvious place such as a large bowl in the sitting room.
Try to take things at a slower pace. That way you may be able to continue to do more things for yourself, even if it takes longer. Doing things at the same time each day or each week can also be reassuring but do try to continue visiting people and going on short holidays.
You may find that some of your previous interests are too stressful or demanding but there are probably many activities that can still give you pleasure.
- Try to find things to do that you still enjoy.
- Caring for a pet can be very satisfying and taking a dog for a walk is a good way of getting regular exercise.
- Conversations between lots of people can be hard to follow. You may find it more enjoyable if friends or family visit one or two at a time.
- Concentrate on those things that you can still do rather than worrying about those you can’t.
I have dementia
A diagnosis of dementia comes as a shock, even if you have been half expecting it. This will be a worrying and upsetting time for you and those close to you and you will all need a great deal of reassurance and support. There is much that you can do, however, in the early stages, that will help to make your life easier and more enjoyable, both now and in the future.
You will want to remain as independent as you can for as long as possible. Although you will gradually need an increasing amount of help, it is important to make sure that other people don’t take over when you can still manage. Make sure too that you are consulted on matters that concern you and that you have the opportunity to make your own choices for as long as you can. What is essential is that you need to keep your confidence and self-esteem.
You can download and print a useful booklet about maintaining memory, written by Paul Whitby, a Senior Clinical Psychologist at Victoria Hospital in Swindon, UK: www.memoryrehab.co.uk
The exact cause of Alzheimer’s disease and most of the other dementias has yet to be established. Many theories have been put forward.
Like most medical disorders, Alzheimer’s disease is probably caused by a combination of genetic factors and environmental influences. Most attention is currently being given to the effects of the build-up of amyloid protein in the brain. What causes this excess of amyloid is not clear. The genes responsible for amyloid production have been identified and studied extensively.
There are a few families where there is a very clear inheritance of the disease from one generation to the next. These are often families where the disease appears relatively early in life. There is valuable info about this form of Alzheimer’s at http://www.fightdementia.org.au/services/younger-onset-dementia.aspx.
In the vast majority of cases, however, the effect of inheritance is small, such that if a parent or other relative has Alzheimer’s disease, your own chances of developing the disease are only a little higher than if there were no cases of Alzheimer’s disease in the immediate family.
The environmental factors that may contribute to the onset of Alzheimer’s have yet to be identified. A few years ago there were concerns that exposure to aluminium might cause Alzheimer’s disease, but these fears have largely been discounted.
Other risk factors are also being studied. Having had a head injury appears to be associated with increased risk. There are suggestions that women who have been prescribed hormone therapy and people taking certain types of anti-inflammatory medication may have reduced risk.
We know a little more about the causes of vascular dementia. Vascular dementia occurs when the cells in the brain are deprived of oxygen from an efficient blood supply. If there is a blockage in the vascular system, or if it is diseased, blood is prevented from reaching the brain. People with high blood pressure, high blood fats and diabetes are at greater risk of vascular disease.
Avoiding being overweight, through a combination of healthy eating and exercise, stopping smoking and avoiding excessive alcohol intake can help prevent vascular disease.