What should you do if you think you are developing dementia?
Many, if not most, of us have worried at some time that we are developing cognitive problems. Perhaps it is an increase in those ‘senior moments’. Maybe we find that we just cannot grasp how to work a new piece of household equipment. Possibly our family and friends are suggesting that we may have a problem and ought to see a doctor.
The popular press is not helpful in the way it describes the first symptoms of dementia. It is common to see statements such as ‘dementia begins by forgetting small things such as where we have put our keys’. But forgetting where we have put our keys is not in itself an indication of early dementia. If you are a carer and have read chapter 2 in this book, you should have a clearer idea of what dementia is and what it is not and be able to decide whether your worries warrant further investigation.
Look again at these symptoms:
Unfortunately, not everyone in the early stages of dementia is able to understand or realise that they have a problem with cognition. Dementia by its very nature can prevent the clear thinking and analysis of symptoms which might help this realisation. You may think that your memory is fine. Everyone forgets the odd appointment, don’t they? It is part of getting old. You have not forgotten where you put your wallet. Obviously someone must have moved/stolen it.
If you are not sure whether you have a problem, or if someone close to you is suggesting that you do, you might first like to look at these questions and answer them honestly:
No one wants to think that they are suffering from a serious disease. Doctors’ surgeries are full of patients who did not attend early in their illness because they hoped that by ignoring the symptoms they would go away. For this reason, if your family or friends are saying they are worried about your memory, you should take their concerns seriously. It might help to remember that other conditions can cause memory loss and confusion. You may not have dementia. However, if you do have the early stages of dementia it is better to have the diagnosis as soon as possible so that you can get all the support available.
Your first step should be to make an appointment to see your GP. If a family member has said that he/she is worried about you, it is a good idea to take him/her along with you when you go to the GP. Your relative will be able to explain to the doctor why he/she is worried about you.
Your doctor is likely to do some physical tests, such as blood tests. This is because there are some illnesses not connected with dementia which can affect your cognition and your memory. Most of these illnesses are treatable so you should welcome the chance to see if a specific illness is the cause of your cognitive problems.
It is quite likely that the doctor will administer a short ‘mental test’. This is simply to check whether the problems you and/or your relative are referring to are ‘normal’ for your age and state of health. You should not be worried about the test and you should not think of it in terms of passing or failing.
After these tests, if the doctor thinks that you have a cognitive problem which needs further investigation, he/she is likely to refer you to a psychiatrist who specialises in mental health in older people. Occasionally he/she may refer you to a geriatric consultant instead. If you have private medical insurance and wish to use that you will probably be referred to a consultant neurologist. The consultant (neurologist, psychiatrist or geriatrician) is likely to give you a longer mental health test and will spend some time talking to you and discussing any problems which you are having with memory. He or she is also likely to want to have a private discussion with your relative, be it wife/husband, or son or daughter – whoever has most to say about your present problems. This can be quite difficult as it may seem as though people are ‘talking behind your back’, but you should bear in mind that no one wishes to hurt you. It is easier for relatives to speak about things which they have noticed when you are not present to be hurt or upset or even surprised by what may be said.
After the first appointment, the consultant may refer you for yet further tests, perhaps with a psychologist, or he/she may order a brain scan. Finally, you will meet the consultant again and hopefully receive a diagnosis. If the diagnosis is not clear to you, then you should ask any questions you need to at this stage.
Some doctors are reluctant to give a clear diagnosis. A diagnosis of dementia depends upon signs of a progressive cognitive decline. Sometimes it may be necessary for the consultant to see you again after a few months to assess if this is happening in your case. It can be difficult to ‘wait and see’, but the consultant will be trying to do his/her best to give you an accurate diagnosis. In the meantime, there is nothing to prevent you doing things to help yourself and if you read further in this chapter you can find out what those things are.
If you are diagnosed with early stage dementia or mild cognitive impairment, or if you are caring for someone in this situation, is there anything you can do which can help? Throughout this book I have referred to research which indicates a causal effect for dementia and which has highlighted actions which can help to slow down the effects. In each chapter you will find short sections on how you can help yourself or someone close to you if there is a diagnosis of dementia. The following information is given here so that either you, if you have dementia (or mild cognitive impairment), or your main helper (generally referred to as ‘the carer’) can work out what is best for you.
After a diagnosis you should consider accepting any medication you are offered, at least for a trial period. Many people are put off by the mention of side effects. Modern-day protocols mean that doctors have to point out the possible side-effects of any drug they prescribe. This does not necessarily mean that you will suffer these side effects. Medication comes with an explanatory leaflet which details side effects and also the likelihood of these occurring. If 10 per cent of people are likely to have side effects, this means that 10 out of every 100 people who take the drug will suffer them. It also means (perhaps more importantly) that 90 out of every 100 people who take the drug will not suffer side effects. Most of the dementia drugs are given at a lower dose first, partly to allow for monitoring of side effects. Your doctor should explain this to you.
The reason for at least trialling medication is that, limited in effect as these drugs are, they are the best solution that medicine can offer at the present time. Remember that dementia is progressive; it does not go away or get better on its own. If you refuse dementia drugs, you are refusing the only specific medical treatment that is available. If you do suffer from side effects, they may only last for a short time, or the doctor may be able to adjust your dose to minimise them. If the worst comes to the worst, you can stop taking the medication, but it is worth giving it a try.
Not everyone can be offered the medication that is available as there are some contra-indications (health reasons why someone should not take the medicine). Your doctor will explain these to you if they apply. If he/she does not explain, you should ask why you are not being prescribed medication. Since most of the dementia drugs are now ‘off licence’, they are comparatively cheap and should be freely available where there is no medical reason to indicate otherwise.
Accept any support that is offered to you. In many areas, consultant psychiatrists and geriatricians work closely with support workers from the Alzheimer’s Society, or with dementia advisers, and they will offer you a referral to one of these for support. There will, in any case, be a Community Mental Health team of psychologists, nurses, occupational therapists, speech and language therapists and, sometimes, social care workers, who can give ongoing support where this is required. Sometimes people who are referred privately to a consultant neurologist may miss out on this support because they are not referred, so you should be aware that it is available and make enquiries about how you obtain this.
Often in the first stages after diagnosis people are reluctant to accept ‘outsiders’ and have a strong belief that they can manage the illness alone. This is very understandable. Be aware though that the support is on offer and make a note of contact details in case you want to reconsider later. Even if you have refused support in the past, workers from the Alzheimer’s Society will happily help you when you do approach them. It is also your right to have ongoing support from NHS professionals and social care even if you have refused this support previously. Support workers from the Alzheimer’s Society can help you to get access to social care support.
If you get the chance to talk to other people who have dementia or are looking after someone who has dementia they will probably recommend that you accept any support you can get.
Help yourself – or help the person you care for. Exercise is known to help maintain cognitive levels. In the chapter on exercise we saw that one theory is that exercise has an effect on brain plasticity. In an animal study using rats and mice given the opportunity (but not forced) to use an exercise wheel, researchers focused on a chemical called ‘brain-derived neurotrophic factor’ (BDNF) because this makes possible neuronal connectivity. In simple words, this factor allows neurons to connect to one another and change their connections when new skills are being learned. The researchers expected that the response to exercise would be restricted to motor sensory systems of the brain, such as the cerebellum, primary cortical areas or basal ganglia. Amazingly, after several days of voluntary wheel running, increased levels of BDNF were found in the rats and mice’s hippocampus, a part of the brain normally associated with higher cognitive function. The hippocampus plays important roles in the consolidation of information from short-term memory to long-term memory, and in spatial navigation. In Alzheimer’s disease, the hippocampus is one of the first regions of the brain to suffer damage; memory problems and disorientation appear among the first symptoms of the disease. This research indicated that exercise actually strengthens the neural structure helping the neurons to make connections with each other.1
One large-scale US study, in which levels of exercise and cognitive impairment status were measured over a 10-year period, showed not only that exercise had a beneficial effect on cognition but that the number and different types of exercise performed were inversely associated with the onset of cognitive improvement. The interesting point is that whilst exercise of any kind was found to be beneficial, the number of different types of exercise made a difference. Those engaging in four different types of exercise over a two-week period decreased their risk (of cognitive impairment) when compared with those who engaged in one type of exercise.2
This information, described at greater length in chapter 5 on physical exercise, is repeated here as an example of research which has shown that exercise is beneficial if you have been diagnosed with MCI or dementia. Physical exercise is thought to be more beneficial even than so-called ‘brain exercise’. In some cases, it may seem that the body subconsciously knows that exercise is beneficial. Some people with dementia become very restless and start to take long walks or to pace up and down indoors. Sometimes it seems that they cannot settle down to rest. There may seem to be an inexplicable urge to keep on the move. Others find that they lose the urge for physical activity. It may seem too much effort to even get up from the chair.
There are many ways to increase the amount of exercise you undertake. You can increase the amount you walk – for example, walking to the shops or round the local park. You can work in the garden. Digging, mowing the grass and weeding are all good examples of bodily exercise. You could re-start a hobby such as swimming or golf which you have allowed to lapse. If your mobility is restricted you can take exercise classes aimed at those with mobility problems.
If you are caring for someone with dementia it may be that you have to provide encouragement and opportunity for exercise. Do not be put off by the notion that you are ‘nagging’. Remember that in encouraging more exercise you are acting in the best interests of the person you care for. Exercise is always more enjoyable if it is done along with someone else. Many forms of exercise are also an opportunity to improve your social contacts.
Exercise your brain and keep up a varied social life. It is easy to believe that by completing our favourite crossword each day we are ‘exercising the brain’, and indeed this is a useful as well as enjoyable thing to do. However, to really keep the brain active, we need to keep it on edge by trying new experiences, visiting a variety of places and making the effort to enjoy the company of others. Retirement is a wonderful opportunity to try new experiences. People with dementia may find it quite stressful to plan new things and to visit new places so it may be up to relatives and friends to take over the planning and organising of outings, trips and holidays. Be assured that it is good for someone in the early stages of dementia to keep up their social life and to have new experiences, but be aware also that they will need extra reassurance in strange situations and that they may need someone with them to help them easily to find their way around.
Encourage friends to continue to visit by being open about the diagnosis and giving them information about dementia if they need it. Keep up attendance at any regular outings, such as church services or social clubs, sports occasions and hobby groups, visiting your adult children and attending local events. By all means do crosswords, quizzes and word searches, and if you are already a competent computer user, try playing computer games. There is some evidence that playing electronic games helps the brain. It is probably better not to put yourself under stress by trying to learn something completely new, so if you are not used to the computer do not attempt to learn now. However, you could certainly revisit old hobbies and pastimes to see if they reinvigorate you. Above all keep doing the things that you enjoy as long as you are able to do so.
If you are the carer, then be aware that you may have to take quite an active part in encouraging a continued social life. You may have to initiate activities and visits, and sometimes this can be quite tiring, especially if the person you are helping seems less than enthusiastic. It helps to enlist the assistance of friends here. Explain to them the effect that dementia has on the ‘executive’ part of the brain and ask them to give invitations or to suggest outings and to persist in the face of perceived inertia.
Guard yourself against infection and accidents. This does not mean that you should become fearful and over cautious, but you should, if you have a diagnosis of dementia or are caring for someone who has a diagnosis, take sensible precautions against catching cold. You should nurse a cold so that it does not develop into a secondary infection, practise good hygiene and eat a sensible diet to give your body the best chance to fight an infection. If you think that you have any infection, then visit your doctor promptly for the proper treatment. If you are caring for someone with dementia, remember that any infection can make cognitive problems worse, and be alert if the person you care for seems suddenly to go ‘downhill’. It may be the first signs of an infection or illness. Urinary tract infections, for example, can take you by surprise in this way. If your GP is not sympathetic or seems not to understand the problems of having or caring for someone with dementia, then remember that it is your right to change your GP at any time.
Check your home environment and make sure that simple things like poor lighting, trailing wires and loose rugs are attended to in order to minimise the chance of falls. Don’t take unnecessary risks when doing odd jobs around your property. Use the proper safety equipment and tools for the job, and don’t climb up ladders or on to furniture to reach things without someone else being at hand. You want to avoid any chance of a stay in hospital because an accident which results in a hospital stay may make dementia worse.
An admission to hospital (perhaps due to an accident) is very likely to result in a deterioration in dementia symptoms. Records show that 30 per cent of elderly people admitted to hospital end up being discharged into a residential care home.
Eat a good nourishing diet. Remember that the diet that was recommended in mid-life may not suit an older person with dementia. It is more important to increase your intake of fat and oily fish than to struggle to eat ‘five a day’. You should reduce your intake of processed carbohydrates and try to eat as much unprocessed food as possible. You should cut sugar intake and be careful about the amount of alcohol you drink.
If you are caring for someone with dementia, remember that they may forget how many drinks they have had and you may need to help them to keep account of their alcohol intake.
There is some research which indicates benefit from various food supplements and taking these is unlikely to do any harm and may be beneficial. It is important to ensure a proper intake of vitamin D and vitamin E and you might like to try adding coconut oil to your diet. If someone with dementia starts to lose weight, then it is most important to ensure that everything eaten is rich in nutrients. In this case you should switch to using full cream milk, increase your intake of cheese and eggs, and cut down on cakes, biscuits and sweet things so that you are hungry for nutrient-rich food. Food can also be fortified to help increase the nutritive value, and your speech-and-language therapist or dietician (if you have one) can advise you about this.
Attend to practical matters about the future. Presently we do not have a cure for dementia, and we know that it is a progressive disease. If you have just been diagnosed with dementia, then take the opportunity to deal with practical matters whilst you are able. It is worth sitting down with your family and discussing your own needs and wishes for the future. If you become unable to manage your financial affairs, you would wish them to be managed by someone you can trust. Set up a Lasting Power of Attorney now if you haven’t already done so and then this can be arranged easily should it become necessary. Do not leave this until you ‘need it’. The time when you need to arrange this is now whilst you can still think clearly.
If someone with a diagnosis of dementia is living alone then it is important to think carefully about future arrangements. As the disease progresses, people who have dementia find it more difficult to deal with the activities of daily living, such as washing or bathing, dressing, preparing meals and keeping the house clean. Although someone who lives alone can be helped initially by arranging for visiting carers, and for friends or neighbours to be on hand to help, this kind of arrangement is limited. As the disease progresses, it will be difficult for someone with dementia to continue to live alone and independently. The early days after a diagnosis are an opportunity for family and friends to help them to plan arrangements for the future.
Do not feel that you have to ‘cover up’ or, as someone once put it to me, ‘avoid going public’ about the diagnosis of dementia. If people know that you have a problem, they can help out. They are also more likely to keep offering invitations and to continue social contact if they understand what is wrong. It can be very frustrating for friends to have their invitations turned down or their visits curtailed without understanding why. In these circumstances it is understandable that acquaintances fall away and friends become more distant. If you are caring for someone with dementia, the time will come when you will be glad of any help and be grateful for friends who continue to keep up a relationship, even when their overtures are rejected by the person with dementia.
It is a good idea to make sure that friends and neighbours understand about the diagnosis and also what they can do to help. Most people are pleased to help, but many do not understand how they could adapt their behaviour or how dementia can affect a person’s cognitive abilities. The Alzheimer’s Society offers some very clear explanatory factsheets which you can download from their website and pass around if you feel unable to explain clearly yourself.
Relatives should be aware of the difficulties that can arise within families when one of their members is diagnosed with dementia. Differences of opinion in how to manage certain behaviours, practical decisions that have to be made, and a basic misunderstanding of what dementia means, can cause huge and surely unnecessary rifts in families, which may persist for years. Where there is a second or subsequent marriage and step-children are involved, life can become even more complicated. It is a very good thing if, early in the days after the diagnosis, the family can get together and agree to act only in the best interests of the person with dementia. This can mean setting aside old resentments about favouritism during childhood, feelings of betrayal after a divorce and subsequent re-marriage, and feelings of guilt or anger at the amount of extra care being given, or in some cases not given, by others. None of this is easy to do but it can help to think about whether you actually want to make the life for the person diagnosed as happy and stress-free as possible. Sons or daughters who are not regular visitors to the home should beware of suggesting that:
‘Dad seems fine to me.’
Or
‘You’re making too much of it, Dad. Mum seems to be managing most things.’
The truth is that unless you are on the spot every day you cannot understand the level of stress which a carer may be going through as the disease progresses. What children can do is to provide relief and respite. Parents are often reluctant to ask children to help under the mistaken surmise that they are too busy or should not be asked to interrupt their routine. Dementia is generally a disease of older people and their children may be at a very busy time of their lives, occupied with their careers or with a growing family. It is worth remembering that as the disease progresses, carers need literally ‘time off’. People with dementia often do not like being left alone – they seem to need the security of having someone around them. Later in the progression of the disease, it may be unsafe to leave someone who has dementia alone as they may no longer recognise common dangers; they may forget ordinary safety routines, or to eat and drink, and they may wander off looking for their carer. Adult children can give real respite by giving their time to allow Mum to visit the hairdresser, Dad to tackle his garden in peace, either parent to go for a quiet game of golf or visit the cinema or simply have a couple of hours out with friends. Even a few hours ‘off’ each week can make the difference between a carer managing to cope and collapsing from over-stress.
Children should also be understanding about the possible future need for residential respite care. Unless they are prepared to ‘take over’ the caring role for 24 hours a day, for at least a week, they can have no concept of the need the main carer may have for a ‘holiday’ from 24-hour care.
Try to avoid making major life changes – for example, moving house. It is important that the person with dementia feels secure and one of the things that enhances this sense of security is familiarity with one’s surroundings and avoiding major changes. Often, when confronted with the diagnosis, families think this is the right moment to make changes which they have been meaning to make ‘sometime in the future’. This may be, for example, downsizing to a smaller home or even considering moving to a ‘retirement complex.’ On the surface this may seem a good idea since it is wise to plan for a future when extra help and support may be needed. A garden or a house which is becoming too large to manage, for example, can seem like an extra unnecessary burden. It is also true that some retirement complexes offer assisted living as part of their package and this may seem attractive when considering the future. However, house moves, even sensible ones, are stressful and disruptive to routine and generally after the move the person with dementia becomes worse, seeming to be more insecure and to lose more abilities more quickly than expected. The family home, especially, can be a source of many memories, and old memories play a big part in giving a person with dementia a feeling of security and continuing identity. If you can arrange help in the house and garden for the things you can no longer manage, and (if necessary) organise transport if you can no longer use the car, then it may be better to continue living in familiar surroundings as long as possible.
It may seem that a diagnosis of dementia is a devastating blow and perhaps the advice above has given you a great deal to think about. But this time can also be an opportunity to take stock and remember the important things in life. If you have been diagnosed with dementia, or if you are caring for someone with dementia, then by all means prepare for the future – but above all, now is the time to enjoy the present. Get the most out of life every day.
1. Cotman CW, Berchtold NC. Exercise: a behavioural intervention to enhance brain health and plasticity. Trends in Neoroscience 2002; 25: 295-301.
2. Jedrziewski MK, et al. Exercise and cognition: Results from the National Long Term Care Survey. Alzheimer’s and Dementia 2010; 6(6): 448-455. DOI: 10.1016/j.jalz.2010.02.004.