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On diagnosis


Getting started: using this website

Everyone experiences dementia in his or her own, individual way. You may find that some of the information given here is not relevant to your needs. The person you are caring for may never become incontinent, for example, or may not lose his or her appetite.

The information provided can be of use to people who are newly diagnosed with Alzheimer's and to the people caring for them.

You may also find that the dementia does not progress along the lines of the early, middle and late stages outlined. No two cases of dementia are ever the same. The best way to use this information is to ‘pick and mix’ – choose the sections that are relevant now and come back to the website in future, when you may need more advice.

Another organisation that can assist is DASN (Dementia Advocacy and Support Network International). This is a worldwide organisation by and for those diagnosed with dementia, people working together to improve the quality of their lives: www.dasninternational.org

If someone in your family has been diagnosed with Alzheimer's, there are some things you should start to consider.

The following links provide useful info for both sufferers and those caring for them:

I have dementia

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

Things to consider

Things to consider

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 info@alzheimers.org.za or phone our helpline.

Work

  • 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.

Services

  • 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.


Health

  • 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.

Driving

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.

Memory

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.

Routine

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.

Enjoying life

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.

Maintaining independence

Maintaining independence

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)

 

Talking helps

Talking helps

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.

 

Decision-making

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. More
  • 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

 

Carrying on working

Carrying on working

If the person with dementia is still working, there may be various ways to support him or her so that the job can continue for some time, or the person may decide to switch to another post, or to work part-time. Encourage the person to get expert advice, for instance from an occupational therapist.

 

Telling family and friends

Telling family and friends

There is no right way of telling family and friends about a diagnosis of dementia. The decision will depend on the strength of the relationships and the personalities involved. Try to respect the person’s decision about how or whether to tell other people about the diagnosis.

Telling the children
When you are very upset about someone close who has dementia, it is easy to forget just how anxious and confused your children may feel. Children need clear explanations and plenty of reassurance so they can cope with the changing situation. Though the facts are upsetting, it may be a relief to know that their relative's strange behaviour is part of an illness and not directed at them.

You will have to ensure that your explanations are at the level of your child's age and understanding, but always try to be as honest as you can. It is more upsetting for children to find out later that they cannot trust what you say, than it is to cope with the truth, however unpleasant, with your support.

Giving explanations

  • It is always hard to take in worrying and sad information. You may find that the children will need explanations repeated quite frequently, so be very patient.
  • Encourage the children to ask questions and listen to what they have to say, so you can find out what might be worrying them.
  • Give them plenty of reassurance and hugs and cuddles at the right time.
  • Practical examples such as your relative forgetting an address, getting words mixed up or wearing a hat in bed, can often help you make a point more clearly.
  • Use humour. It often helps if you can see the funny side of a situation and laugh together. Do not laugh at the person with dementia, however.
  • Concentrate on the things that the person can still do, as well as those that are becoming more difficult.

Children's fears

  • Your children may be frightened to talk to you about their worries or show their feelings in case they upset you further. They may need to be encouraged to talk about it.
  • Young children may believe that they are responsible for the illness because they were naughty or had 'bad' thoughts. Older children may worry that the dementia is a punishment for something their relative did in the past. In both instances, they will need to be told that this is not so.
  • Children will need reassuring that it is unlikely that they or any other relative will develop dementia just because they are related to someone with dementia.

Changes for your child
It is important to remember that when someone develops dementia, everyone in the family is affected. Children need to know that you understand the difficulties they face and that you still love them, even though you may be irritable or not giving them enough attention. Try to ensure that you make time to talk to your child without interruption. Young children will need reminding of just why their relative is behaving in such a strange way and all children may need to talk about their own feelings, as new problems arise.

Difficulties they may wish to discuss might include:

  • Grief because of what is happening to the person they love and anxieties about that person's future.
  • Fear, boredom, irritation or embarrassment as a result of the person's behaviour, perhaps mixed with guilt for feeling this way. This reaction can be expected more from the teenager than from the younger child.
  • Having to take responsibility for someone they may remember as having been responsible for them.
  • Feelings of loss because their relative can no longer communicate with them or because things are not the way they were.
  • Anger because other family members are stressed and have far less time for them than before.

Expressing feelings
Children react differently to experiences and show distress in different ways.

  • Behaviour that may seem attention-seeking or naughty, nightmares or difficulty sleeping, or inexplicable aches and pains may suggest that your child is very anxious about the situation and needs even more reassurance.
  • Schoolwork often tends to suffer as children who are upset find it harder to concentrate. It is a good idea to have a word with your child's teacher so that the school is aware of the situation and understands the difficulties.
  • Some children put on a cheerful front or appear uninterested although they may, in fact, be very upset. You may need to encourage them to talk about the situation and express their feelings.
  • Other children may be very sad and, at times, cry. These children need a great deal of attention over quite a long period. Try to give them some time each day to talk things over, even if you are very busy.
  • Teenage children often seem involved with themselves and may retreat to their own rooms or stay out more than usual. They may find it particularly difficult to cope because of all the other changes and concerns in their lives. They will need reassurance that you love them and understand their feelings. Calmly talking to them may help them sort out some worries.

Involving the children

  • Try to find ways of involving your children in the care and stimulation of the person with dementia, but don't give them too much responsibility or let it take up too much of their time. It is very important to encourage your children to continue their normal lives.
  • Make it clear that just being with the person for short periods and showing love and affection is the most important thing they can do.
  • Try to ensure that time spent with their relative is pleasant - going for a walk together, playing games, sorting objects or making a scrapbook of past events, for example.
  • Talk about the person with dementia as he or she was, and show your children photographs and souvenirs.
  • Take photographs of the person with your children to remind you all of the good times, even during the illness.
  • Don't leave your children alone in charge, even for brief spells, unless you are sure they are happy about this and can cope.
  • Make sure your children know that you appreciate their efforts.
  • Tell your children how proud the person would be of them if they could understand and express themselves.

 

Driving

Driving
A diagnosis of dementia is not in itself a reason to stop driving. Many people with dementia drive safely for some time, but if deteriorating health could result in unsafe driving, it is unwise to continue.

Each case has to be judged on its merits and a spokesman for the Automobile Association recommends that you get your medical practitioner/specialist to advise you as to when continued driving would pose a real threat to the driver and other road users.

Another consideration is that failure to disclose a diagnosis of dementia to the car insurance company might jeopardise the validity of the policy.

Having other transport options may make it easier to come to terms with the decision to stop driving. Obvious alternatives include taxis and public transport. Your local Metropolitan Council or municipality will have information on transport options and whether any of these are subsidised.

For an extract from the National Road Traffic Act of 1996 (Act 93 of 1996), contact our helpline on 011 792 2511 / 8387 or 0860 102 681, between 09h00 and noon.

The Arrive Alive Road Safety Website has made available very useful information about Alzheimer’s and Road Safety. Click on the link to view the information: http://www.arrivealive.co.za/pages.aspx?i=2876 or email nancy@alzheimers.org.za for a copy.

Future care

Future care
Although not considered a legal document, an advance directive (also known as a living will) allows persons with dementia to outline the treatment and care they would like in the future, when they may not be able to communicate their wishes.

An advance directive enables people with dementia to:

  • Give their consent to particular forms of treatment
  • Refuse certain treatments
  • Give the name of someone they want to make decisions about care and treatment on their behalf

You can’t use an advance directive to ask a doctor to do anything unlawful and you cannot refuse basic care such as food, drink and pain relief.

 

Where to get help
Care services

Care services

 

The Independent Living Centre, Cape Town:
Physical address:


The Roll-In Shop
2 Begonia Street
Milnerton
7441

Postal address:

P O Box 1544
Milnerton
7435

Telephone: +27 21 555 2881

Facsimile: +27 21 555 2888

email: director@apd-wc.org.za

For details of branches of Independent Living Centres/Roll-In shops in Worcester, George, Knysna, Oudtshoorn, Vredendal and Wynberg, please talk to one of our helpline counsellors on 011 792 2511 / 8387 or 0860 102 681.

The Independent Living Centre, Johannesburg:
Physical address:

Netcare Rehabilitation Hospital
Corner Bunting & Canary Rds
Auckland Park

Postal address:

P O Box 248
Auckland Park
2006

Telephone: +27 11 482 5474/5/6

Facsimile: +27 11 482 5565

email: ilcentre@icon.co.za

 


 

Nursing agencies
We have lists of home carers and agencies that provide home carers. Please contact the national office or your local office of Alzheimer's SA for a copy of the list for your area. If you would like to be included on such a list, please email coordinator@alzheimers.org.za.

 

Health care practitioners

Health care practitioners


The following health care practitioners have a particular interest in the dementias. Should you wish to be listed here, please contact Alzheimer's South Africa at 0860 102 681 or 011 792 2511.

NEUROLOGISTS

Dr K D Rosman
P O Box 5332
Rivonia
2128

Tel 011 784 0278
Fax 011 884 6292

Dr Christo Coetzee
P O Box 25026
Gateway
4321

Tel 031 566 1930 / 261 6630
Fax 031 566 2886 / 261 6632
cccoetze@mweb.co.za


GERIATRICIAN

Dr Stanley Lipschitz
Postnet 252
Private Bag X31
Saxonwold
2132

Tel 011 327 1300
Fax 011 327 1299
082 410 1788
s.lipschitz@bonestan.co.za

Rooms in Rosebank