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Independent living

The onset of the disease


Introduction

It is best to consider as soon as possible how you are going to deal with certain matters relating to the person’s independence. Matters relating to their personal liberty such as whether it is safe for them to drive, go out alone, drink alcohol or smoke have to be dealt with. Financial matters also have to be considered, e.g. should they be able to write out cheques and make financial decisions? These and similar questions should be discussed with the person with dementia at an early stage when they are still able to play a role in decision making. When you are trying to decide how to handle the above-mentioned situations, you will probably find yourself split between trying to leave the person with dementia with as much independence as possible and at the same time trying to protect them from possible risks and dangers. The following guidelines may help you in making your decisions.


Driving

In the early stages some people who have been diagnosed as having Alzheimer’s disease can still drive safely, but as the disease progresses the ability to drive will almost certainly deteriorate. The person may start to find it difficult to find familiar places, fail to observe road signs and respect rules of the road, drive too fast or too slow, have slow reactions and become confused, frustrated or angry while driving. However, people with dementia are often extremely reluctant to give up the right to drive, as it is one of the last signs of their independence and adulthood. It can therefore be difficult to convince them of the necessity to stop driving. But, it is too dangerous an issue not to be dealt with straight away.

You should first try to discuss the issue of driving with the person with dementia, pointing out the possible dangers of driving, as well as the benefits of not having to. They may feel angry and depressed about the loss and need support during this awkward period. It might soften the blow if you were to arrange for other forms of transport or for other people to drive the person around. However, persuasion does not always work and some carers have tremendous difficulties trying to stop the person with dementia from driving. If this is the case, you might find that the person is more willing to listen to a doctor, the police or someone in authority. If this is also unsuccessful, you may have to try to prevent them from driving. You could, for example, hide the car keys, arrange for the car not to work (e.g. by removing the distributor cap) or park the car further down the street out of sight. If it is not needed, you could even sell the car and the money saved would help pay for other means of transport. One carer overcame this problem by leaving the car out ready to drive without the ignition key. Her husband sat in it and happily “drove” for hours changing gears and signalling without actually moving. Whatever you decide to do, you should inform the insurance company about the diagnosis of dementia.


Smoking

Care should be taken not to let the person with dementia smoke alone as it is a fire hazard. Also, some people with dementia might forget that they are holding a cigarette and it could burn their fingers. You should try to persuade the person to cut down on smoking and preferably stop. People with dementia often forget to smoke and then don’t miss cigarettes once the habit has been broken. However, if they continue smoking, there are a few useful precautions to take, e.g. put large ashtrays everywhere, replace wastepaper baskets with metal bins, buy flame resistant clothes and furniture, fit smoke alarms and keep matches out of reach. Smoking alone, particularly in bed, is the biggest risk. You might have more success persuading the person with dementia to restrict their smoking to times when there is company, rather than trying to prevent it altogether. It is important to pay particular attention not to let the person smoke if they are using nicotine patches as this greatly increases health risks.


Drinking alcohol

Alcoholic drinks may increase confusion in the person with dementia. Although the occasional social drink should not cause particular concern, it is best to ask your doctor’s advice about whether the person with dementia should have access to alcoholic drinks. This is particularly important if they are under medication. Even if the doctor agrees to the person having an occasional drink, you will still need to make sure that they do not have more. Loss of memory may result in the person with dementia forgetting that they have already had a few drinks. It is best to keep alcohol in a locked cupboard or hidden away.


Public transport

Early on in the disease, the person with dementia might be able to use public transport. But as the disease progresses they may start to have difficulties remembering where they are going, paying the fare, getting the right bus or train, getting out at the right place, etc. When this happens the person could feel embarrassed and afraid, particularly if they cannot remember where they are going or where they live. For this reason, in the later stages it would be preferable to try to arrange private transport. You could perhaps make a plan in advance of different people who are willing to drive the person around.


Administrative formalities and personal finances

The person with dementia might also have financial obligations or assets of little or considerable importance. It is necessary to discuss financial matters early on so that the person with dementia can make decisions while they are still able, appoint someone to handle their financial matters when they are no longer able and make a will. If you are handling the person’s finances, keep them separate from your own and keep a record of what you spend and receive in case you are asked to account for it at some stage. The person with dementia might forget what was decided however many times you might explain it. You might also find it necessary to help the person with dementia to deal with administrative formalities, e.g. collecting benefits, filling out forms, etc. There are a few possibilities for handling this such as an Enduring Power of Attorney. Your Alzheimer’s organisation will be able to give your more details.


Guardianship

As the disease progresses the person with dementia will become less able to defend their own interests. It is possible to appoint a guardian to protect their interests and make decisions on their behalf (e.g. on where to live, health issues, etc.). This would help in situations where the person with dementia did not or was unable to take the decision at an earlier stage.


Handling money

People with dementia tend to experience difficulties handling money even fairly early on in the disease. Due to a loss of memory and understanding of the symbolic function of money, they may pay for something more than once, not pay at all, give money away or lose it. In this way problems can accumulate without you necessarily realising. In order to maintain their sense of wellbeing and self-esteem, you might be able to arrange for the person with dementia to carry on paying for goods and services (whilst ensuring that the risk of mistake or being taken advantage of is minimised) and ensure that they always have some money on them. Some carers have found that certain shopkeepers and hairdressers are willing to take cheques from the person with dementia, which are no longer valid, but which are then replaced by the carer. Sometimes, local shopkeepers who are understanding will let you pay later for articles which the person with dementia takes out of the shop without paying. Payment of regular accounts (e.g. electricity, gas telephone, etc.) can be settled by arranging direct debits with your bank.


Going out alone

You may be worried about the person with dementia going out alone for various reasons, e.g. traffic, the risk of getting lost or robbed etc. However, they might object to being accompanied everywhere, seeing this as an invasion of their privacy. You will therefore need to be extremely tactful in trying to keep an eye on their whereabouts. (Please see chapter on wandering).

 

 
 

Last Updated: Thursday 06 August 2009

 

 
 

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