Help and Advice for Relatives of Demented Patients

Many people think that Alzheimer's disease is a synonym for dementia, but there are several forms of dementia of which Alzheimer's disease is the commonest. Other forms may be slightly different in their presentation. Alzheimer's tends to be a disease of old age, although it can occur rather younger. Some of the other forms of dementia do present in middle age or younger. There is much in common with all types of dementia and the approach to those with the condition is similar. By and large, what is written here is applicable to all forms.

As we get older we all tend to deteriorate both mentally and physically and with both body and mind there is some truth in the adage, "use it or lose it". However, dementia is not simply "getting a bit old", but a specific disease that can strike even the most brilliant intellect and when it does, it seems more tragic than ever.

Caring for a person with dementia can be a devastating task. That person may be a parent or spouse who has been known and respected in much kinder days and it is heart rending to see the deterioration. In the later stages especially there may be physical problems including the indignity of incontinence. The person may seem most ungrateful and even aggressive and this can be hurtful for the carer.

The purpose of this article is to give the person who cares an understanding of the disease, some knowledge of what to expect, some techniques to help cope and hopefully a feeling of "you are not alone".

Between 5 and 8% of people over 65 have moderate to severe dementia. The prevalence doubles every five years over the age of 65 to about 20% by the 80s.

Alzheimer's disease accounts for 50 to 70% of dementia. Dementia can be part of another disease and occurs in about 20% of cases of Parkinson's disease and rather more of those who have had it for many years. It can follow head injury or multiple small strokes. Less than 1% of patients with dementia have a fully treatable cause such as an underactive thyroid gland or vitamin B12 deficiency.²

In the early days the pattern of memory loss is characteristic. Memory of recent events is impaired whilst memory of distant events is intact. The brain stores short and long term memory in different places. Hence the person may be able to recount in great detail and with great accuracy details of their youth and perhaps war time experiences, but they cannot remember what they had for breakfast. One of the early manifestations of this is losing things. The person puts something down and forgets where it is. Intelligent people in particular develop techniques to overcome impairment of memory. One technique is to make lists. Many people make lists, including women around the menopause. Therefore it should not be assumed that everyone who makes lists is suffering incipient dementia.

Old people often take medicines and are often on multiple medication. This means taking a number of tablets at a number of different times a day. It is very easy to get confused, even with fairly good mental faculties, but any deterioration increases the risk considerably and taking drugs incorrectly may aggravate confusion. Hence it can be a vicious circle. Chaotic taking of medication may be a presenting feature and if anyone is confused it is certainly worth checking how they are taking their medicines. Many old people have little idea what they are taking and what those tablets are supposed to do.

Being forgetful is embarrassing and people try to hide it. "Of course I remembered that you were coming round," they say when you take them by surprise. They may try to avoid new places and new things as in familiar surroundings the long term memory may see them through. They may even fill in gaps in the memory with wonderful and superficially very plausible stories but more detailed scrutiny will show them to be untrue. This is called confabulation and may be part of Korsakoff's syndrome that is often seen when alcohol plays an important part in the mental deterioration.

The ability to compensate can be most impressive and the true degree of memory loss and intellectual impairment may be hidden very effectively. When compensation is no longer adequate there appears to be a very rapid decline. This is more apparent than real because the true level of impairment was not appreciated when it was being well covered.

Investigation and diagnosis

It is desirable to get an accurate diagnosis at an early stage because there are interventions that may possibly help. These drugs may be initiated only by specialists and not by a GP. A full psychiatric assessment has around 90% sensitivity and specificity. What this means is that around 10% of those who have dementia will be missed and about 10% will be incorrectly diagnosed as having the condition. Imaging such as CT and MRI scans are useful to exclude treatable causes and possibly to determine the type of dementia.

Once the diagnosis is made, some people will not wish to know, but most will appreciate the chance to plan ahead and to understand what is happening to them.

Driving

Driving is a very complex skill and manoeuvres such as turning right across the traffic require complex computation. People with short term memory loss or intellectual impairment should not drive but convincing them of this may be very difficult. Assessing a person's ability to cope really needs formal but simple testing, as simply talking to a person may give a false impression of a very affable and competent individual whilst in reality there are great gaps in memory and understanding. The help of a doctor with tests such as the mini mental state examination may give a more accurate picture and it may come better from a professional than from the family. They may argue that they have been driving for 50 or 60 years and still feel capable. Tell them that since then the traffic has become much heavier and faster and that people are not so considerate on the roads nowadays. Losing the right to drive is a blow to self-esteem that will be resisted. Tell them about the dangers of traffic and whatever else you need to say to get the result.

Other dangers

As memory fails there are a number of dangers that may occur. Sometimes people get lost when they are out and are very vulnerable and very scared. At a later stage they may be inclined to wander, possibly inadequately dressed and in oblivion of dangers such as traffic. There is difficulty coping with money and the unscrupulous may take advantage. They may turn on the gas and forget to light it. It is many years since we had carbon monoxide in the gas but there is obviously still danger of explosion. It may not seem the right time in life to give up smoking, but cigarettes can be forgotten and start fires. It may also seem unkind to restrict alcohol but it is necessary to realise that it impairs mental faculties even in those in their prime and so it will aggravate the features of dementia. It does not have to be banned but its effects must be borne in mind.

It is not simply memory or intellect that suffers, but the disease of the brain can affect higher centres that control matters such as personality and inhibitions. The person may become rude and aggressive. This can be very hurtful to those who are simply doing their best to help. They may pick a physical fight despite their obvious physical inability. Outbursts of violence against carers adds injury to insult. The natural reaction to the rude, aggressive and possibly even violent person is to say, "That's it! I'm leaving you to get on with it by yourself." Try to put your pride to one side and remember that it is the disease that is doing this and not the person you once knew. This is difficult but important.

Lack of inhibitions can lead to overt sexual talk and behaviour that are totally out of character with the previous personality. When a parent starts getting sexual this can be most embarrassing and upsetting. There may also be most hurtful and unfounded allegations of sexual infidelity by others. This is especially likely where alcohol is an important factor.

The frontal lobes of the brain are responsible for personality and social inhibitions and so it is unsurprising that in fronto-temporal lobe dementia, formerly called Pick's dementia, that these features are especially marked. There may also be apathy and antisocial developments such as theft.

As the brain deteriorates it ceases to perform so well in tasks demanding manual dexterity. This is called apraxia. There is inability to wash and dress. Buttons are particularly difficult for the person with apraxia. It is often around this stage that aggression is a feature, especially in Alzheimer's disease. This can be very hurtful and difficult to manage. Co-ordination becomes impaired and there is an increased risk of falls. Ability to feed oneself is also impaired.

In the final stages there will be complete loss of independence and ability to cope. Originally there was loss of short term memory whilst long term memory appeared intact but all memory becomes severely affected and even long-standing friends, spouse and family are no longer recognised. Incontinence of urine is usual. Double incontinence may occur. Difficulties swallowing and clearing secretions may lead to chest infections and resistance is low. Eventually death will occur.

At this time there may be mixed emotions. There is sadness at the loss of someone close and dear but also often a sense of relief that it is over. The struggle is over both for the sufferer and the carers. It is not wrong to feel relief and it is important not to feel guilty at having that feeling. This was not the person who was known and loved all those years ago. The face of the person who suffers from dementia often looks haggard and strained. In death the face often shows a more relaxed appearance. The struggle is over. The race is run and there is a sense of relief.

Nursing someone through the full spectrum of dementia is an enormous task. Sometimes people say, "I promised for better or for worse and I intend to keep that promise." This is admirable, but it does not mean that you have to shoulder all the burden yourself. In the early stages you may need to get someone in to stay with your charge whilst you go out. Do not be ashamed of needing a break at times. You need to get out. You need time out. You even need someone to share with you how you feel, someone to empathise, someone to moan to. Be conscientious but do not be a martyr. If you make yourself unwell in body or mind you will not be able to cope. Social services may be able to offer help. The district nursing team may be able to help. As the disease advances then time in a day centre or even residential care may be required. Do not feel a failure. Visit regularly. Spend time. Talk freely although what you are saying may not seem to be registering.

Organisations such as the Alzheimer's Disease Society can be useful in a number of ways. They may put you in touch with others who are or who have suffered in the same way as you. They may be able to offer practical help and advice and to tell you who to approach for help. You are not alone. There are many others in the same position and mutual support can be invaluable. Their website is listed at the end and it is well worth visiting.

NICE has produced a paper on treatment and health and social care of people with dementia.³ This states that, "Carers of people with dementia who experience psychological distress and negative psychological impact should be offered psychological therapy, including cognitive behavioural therapy, conducted by a specialist practitioner."

There is no drug that will cure dementia although there are some that may slow the decline with the disease. As Alzheimer's disease is the commonest form of dementia it is unsurprising that the research has concentrated on this disease and the drugs are licensed only for that condition. The drugs are donepezil, rivastigmine, galantamine and memantine and NICE has issued guidelines for their use.⁴ They are recommended as options for the treatment of moderate Alzheimer’s disease only. Memantine is a newer and different class from the rest and has been less adequately tested. A Cochrane review found that 'Memantine has a small beneficial, clinically detectable effect on cognitive function and functional decline measured at 6 months in patients with moderate to severe Alzheimer's Disease (AD).'⁵ Memantine is currently not recommended as an option for people with moderately severe to severe Alzheimer’s disease unless it is being used as part of a clinical trial.

When using the Mini Mental State Examination (MMSE) to assess the severity of Alzheimer’s disease, healthcare professionals should make sure that people from different ethnic or cultural backgrounds and people with disabilities have equal access to treatment. The committee concluded that donepezil, galantamine and rivastigmine are both clinically and cost effective in patients with a MMSE score of between 10 and 20 points (moderate Alzheimer's disease) but they benefit only around 40% of patients.

A Cochrane review of the choline esterase inhibitors, donepezil, rivastigmine and galantamine was generally enthusiastic.⁶

The NICE recommendations for these drugs is summarized:
Patients with Alzheimer's disease should be assessed using the mini mental state examination (MMSE) and should have a score of 10 - 20 points in the following circumstances:

• It must be confirmed by a specialist clinic that the form of dementia is Alzheimer's disease.
• The patient must be sure to take their medicine regularly.
• Only specialists (including old age psychiatrists, neurologists, and care of the elderly physicians) should start treatment with these drugs and assessment in a specialist clinic should be made before the drug is prescribed:
• Carers should be asked for their views of the patient's condition before treatment and during follow-up appointments.
• The assessment should be repeated usually 2 to 4 months after reaching the dose of the drug that is considered suitable to maintain control of the symptoms (the maintenance dose).
• After the assessment, the drug should only be continued when there has been an increase in, or no decrease in the MMSE score, together with improvements in behaviour and/or functioning. This is because not all people taking these drugs benefit from them.
• For those who do not show improvement, or a slowing down of the disease, in the first few months, it is unlikely that they would show any benefit later on and medication should be stopped.
• People with Alzheimer's who continue on the drug should have this assessment repeated every 6 months. The drug should normally be given when their MMSE score is above 10 points, and the other tests show that the drug is having a worthwhile effect. When the MMSE score falls below 10 points, patients should not normally be prescribed any of these three drugs. Sometimes drug treatment is stopped for a short period in order to determine whether a person is benefiting from the drug treatment.

Sedation

Where there is aggressive and unacceptable behaviour, sedation may be indicated. The most commonly used drug is haloperidol. It is effective but side effects may limit its use. Such drugs should be used with care if at all in dementia with Lewy bodies as they are very sensitive to side effects. Loss of sleep patterns may also benefit from short acting sleeping tablets but they may act rather longer than intended. If a person appears to be very incoherent in the morning but much more lucid in the afternoon, it is probably the sleeping tablet that is acting rather longer than just through the night.

Antidepressants

In the early stages of dementia it may be difficult to decide if the diagnosis is dementia or depression. If there is doubt a doctor may give a trial of antidepressants on the grounds that if it is depression they may well help but if it is dementia they will not help but they will do no harm. Depression may be an early feature of dementia and 12% of people with dementia are also depressed.⁷

Herbal treatments

Ginko biloba is a Chinese herbal remedy that has been assessed for efficacy and adverse effects. It can be bought without prescription but may need to be taken for a year before any benefit is noted. It does appear to be better than placebo but not as good as the other drugs. Not all studies have shown benefit and the quality of studies is variable.⁸ There is a possibility of selective publication giving a distorted picture. Ginkgo causes bleeding when combined with warfarin or aspirin, raises blood pressure when combined with a thiazide diuretic and possibly causes coma when combined with trazodone. The effective dose is unknown and the potency of preparations is unreliable. It is an interesting product but needs much more investigation.

Salvia officinalis is another herb that is available without prescription. It appears safe and a trial suggest efficacy,⁹ but SIGN were unimpressed by the results.¹⁰ Do not use herbs without letting the doctors know. There may be drug interactions and as herbs are not routinely used in medical practice the doctors may be unaware of the potential dangers.

The SIGN document gives a number of drugs and types of drugs that have been tested for benefit in dementia and found to be ineffective.¹⁰

Every adult should make a will. Many people think that what they want after their death is clear and uncontentious and will simply happen. Often it is not and probate, that includes unfreezing bank accounts and ability to finalise details, is delayed and more difficult in the absence of a will. About a third of people die intestate (without a will). A will is valid only if it was made by a person of sound mind. Hence it is important that a person with dementia makes a will at an early stage.

Whilst still of reasonably sound mind, people may wish to make advance directives with regard to their later management. Although the legal standing of such documents is still not entirely clear, it may facilitate later management. The Mental Capacity Act governs decision-making on behalf of adults, where they lose mental capacity at some point in their lives or where the incapacitating condition has been present since birth. The bill received Royal Assent in 2005 and is now an Act of Parliament.

At a later stage the person will be unable to manage their own finances and it is best to make alternative arrangements for another to take over before this is reached. This will include getting signatures authorised for bank accounts. If this has not been done but the person is beyond understanding financial matters it is possible to get a Court of Protection Order. This will need the services of a solicitor and will require a statement from a doctor who has examined the person. Help and advice is available from the Alzheimer's Society, Citizen's Advice Bureau or from solicitors.