Living with dementia
Nutrition and dementia
What you eat (especially a Mediterranean diet) can reduce the risk of cognitive decline and keep you physically healthy even if you have dementia. Over time, people with dementia lose the skills necessary for food preparation and forget to eat and drink enough. Using the stove may become dangerous, shopping difficult and food storage risky. For a person living on his/ her own, pre-prepared meals (produced by family or friends or commercially, or Meals on Wheels) may help them manage longer at home.
Personal care, including washing, bathing and dressing, is a common source of anxiety for people with dementia and their carers. It is quite common for people with dementia to lose interest in, or forget about, personal hygiene. Although this can be upsetting for carers and families, it is important to try and determine the possible causes and work out ways of coping without argument or confrontation.
Poor dental health can cause pain, infection and malnutrition – with subsequent negative effects on cognition and behaviour. As more and more people preserve their own teeth until later ages, ensuring they are kept in good condition can be a challenge. Try to reduce the amount of sugar in the diet, eat an apple after the meal and encourage them to drink plenty of water. If you need to help someone to clean their teeth, using an electric toothbrush is more efficient. It is important to explain exactly what you are going to do if they are anxious about the procedure. Let the dentist know when a person develops dementia, but try to keep up regular appointments.
People with cognitive impairment fall more often than others. Sometimes, this is due to poor judgement (e.g. walking too fast for a particular situation). They may have perceptual problems, meaning they can’t tell where the seat is behind them, or mistake a change in floor covering for a change in level. Pay attention to various environmental hazards such as loose mats to trip over or water to slip in. Painful feet and unsuitable footwear (favourite old slippers) can contribute to falls.
Sleep is commonly disturbed in dementia. Some of this is the result of the condition itself, but it is worth investigating whether there might be another cause. Pain is worse at night and may be a reason for someone being awake.
If there are no obvious physical problems, remember the following:
- Older people tend to have more fragmented sleep and less of it.
- Try to limit daytime napping, get up at the same time in the morning, get outside and get some exercise.
- Avoid caffeine-containing products after lunch and nicotine and alcohol in the evenings.
- Make sure the bedroom is dark and comfortable and use it only for sleeping (or sex).
- Various alarm systems work to let the carer know if the person with dementia is up and about.
It is very, very difficult and exhausting for carers if their sleep is frequently interrupted. Have someone trusted stay with the person with dementia and go elsewhere for a good night’s rest. Respite care (in a rest home or hospital) will allow the carer to catch up if sleep-deprived.
Driving can seem like an automatic activity. However it is a complicated task that requires complex thought processes, manual skills and fast reaction times. Dementia can cause loss of memory, limited concentration, and vision and insight problems. This affects a person’s judgement and ability to drive safely.
A person diagnosed with dementia may not need to stop driving straight away. However dementia causes a progressive and irreversible decline in functioning, and the person will need to stop driving at some point.
What if someone close to me may have dementia?
If the person continues to drive, discuss your concerns about their driving with them.
Planning for your future:
Dementia is an incurable, progressive condition. Unfortunately, there is a deterioration in memory, judgement, communication and reasoning abilities over time. This means that at some point you might not be able to make decisions or express your wishes. However, this does not mean that you have no say in your own future. Making plans early on means that you can get your affairs organised in advance. You can also direct the sort of care you would like to receive in the future, when you are less able to choose for yourself.
Medical Assessment for capacity
As you have a diagnosis of dementia, before you do any of the following, you may be asked to see a doctor, who will check your thinking and reasoning. This is to make sure that you are still able to make decisions in these areas.
Now is the time to check that your Will is up-todate, and you have made it clear who should inherit your money, property and other things. Get good legal advice ensure it is fair and reasonable. If your thinking deteriorates, at some point you will lose the capacity to change your Will. Hence the need to update it now! Make sure that the people around you know where your Will is kept and which lawyer was involved in putting it together. It may be helpful to have a book in your house with all this written down. Your solicitor, Public Trust, Citizens’ Advice Bureau, Community Law Centre or Dementia NZ Branch can help.
It is helpful to have your financial affairs are sorted out. Often this means simplifying your affairs, if you have a number of different accounts or lots of investments. It may be easier to bring everything into just one or two accounts. If possible, make sure that bank accounts are in joint names (if you’re part of a couple), so that if you can no longer operate the bank account, then your partner can. Discuss this with your bank manager, who can help you make the necessary arrangements (including organising your bank cards and Internet Banking). Early in dementia you will not necessarily want to give up all control over your financial affairs, and it might be just a matter of having a warning system in place if you or anyone attempts to make an unusual transaction. Some bank staff are now trained to be “dementia friendly”. Your bank manager or other financial advisor may be able to assist.
Enduring Powers of Attorney (EPOA)
After you receive a diagnosis of dementia, it is useful to nominate people who will take responsibility for decisions in the future, when you are no longer able to make those decisions. You will need to see a lawyer, who will draw up the Enduring Powers of Attorney documents. He or she will ask who you trust to take over making decisions for you, and check that you are thinking clearly about this. You can appoint someone in your family or a friend, and you can also nominate someone as back-up for that person, if they can no longer act for you. The Enduring Powers of Attorney are mostly not active, until a clinician has assessed you as no longer being able to make decisions yourself. It is only at that point that the person you have nominated will take over decision-making. Even then, they will need to make sure that they are making decisions in your best interest. They will also continue to consult you about things, as far as you are able. You need to keep your Enduring Powers of Attorney in a safe place, and you should give copies to those that you have nominated. Write it down in a book.
Under the law (The Protection of Personal and Property Rights Act), there are two types of Enduring Power of Attorney:
Enduring Power of Attorney for Property
This person (or persons, as it can be shared), nominated by you, will take care of all your financial and property affairs, including businesses, and will make sure that everything is under control and being looked after. They will pay any bills for you and manage your income for you. They will need to consider your wishes and your best interests when doing so.
Enduring Power of Attorney for Personal Care and Welfare
This person (and it can only be one person), nominated by you, will take care of all decisions about your welfare, but only from that time that you cannot do this for yourself. That time depends on how your dementia progresses, but a clinician will need to have done an assessment showing that you cannot make the decisions any longer. This protects you from someone interfering before you need it.
For Enduring Powers of Attorney, talk to your lawyer, Public Trust, Community Law Centre or Dementia NZ worker.
Advance Care Directive
This is about making a plan for yourself to be used near life’s end. This information needs to be shared with your family or friends and your doctor or health care team. An advance care directive is especially important where communication may be limited in the later stages of the condition. The plan would include anything that is important to you and gives meaning to life. It is very helpful to your support people to have on paper what you might like done and relieves them of the burden of having to make such decisions. If you have an EPOA for Welfare they will be the person who helps ensure your wishes are carried out. The plan can be written and kept in a safe, known place. Put it in your book! It does not have to have any particular form, but it might be easier to download it from www.advancecareplanning.org.nz so you have an idea of what you might like to cover.