|Dr Mavis Evans,
Mb, ChB, MRCPsych, Consultant Psychiatrist in Old Age, Clatterbridge Hospital, Wirral, UK.
Extract from Psychiatry in General Practice. (1994) Edited by
ISBN 0-7923-8851-8. Published by Kluwer Academic Publishers
What is dementia?
Dementia can be considered as a global IMPairment of Intelligence, Memory and Personality, in clear consciousness. It can occur at any age but becomes more frequent with age, with a prevalence of 5%-10% in the over 65s and 20% in the over 80s (Saunders 1993). It is seen more frequently in women, due to their increased longevity.
The clinical picture
Impairment of intelligence is shown by the taking of rash, foolish decisions, out of keeping with previous behaviour - the stereoptypical "silly old woman". The patient may become childishly impulsive or erratic. She may show difficulty grasping new ideas or accepting new situations, for example leading to resistance to attending day centres. The rate of processing information becomes slower. Delivery of information or instruction at a rate outpacing that which can be processed leads to the false impression of more severe impairment or to the development of frustration and a catastrophic reaction by the patient. The patterns of thinking become regressive and rigid - the stereotypical"stubborn old man". Impairment of memory is well recognised and often wrongly considered to be the only symptom of a dementia. The short term memory is affected first with preservation of long term memory for some time. The patient may speak of the dead as if they were still alive, which can become distressing for carers. Poor concentration due to other problems such as depression or anxiety can give a false impression of severity of memory loss: if an incident is not registered in the memory, it cannot later be recalled. Impairment of personality is the most distressing for carers, the patient becoming a "different" person. Emotional lability is frequently seen, sometimes progressing to the catastrophic reaction, where a trivial incident such as failure to tie a shoelace leads to severe emotional distress or occasionally anger. Disinhibition may produce aggressive or promiscuous behaviour. Premorbid personality traits may relate to certain types of psychopathology (Chatterjee 1992). As the dementia progresses habits, moral standards and personal hygiene all deteriorate.
Causes of dementia
Because of the relatively limited way the brain has for reacting to insult there are various different disease processes which present with dementia, such as:
Dementia is a descriptive name for the group of symptoms and signs seen in these conditions. General medical nursing and social care is the same for "dementia" whatever the underlying cause. Description of the different types is beyond the scope of this book. Differential diagnosis between even the three most common types: Alzheimers disease, Lewy Body disease and multi infarct dementia is difficult for the psychogeriatrician or neurologist without highly specialised and expensive investigations. With the likelihood of specific drug treatment for specific types of dementia being licensed for use in the reasonably near future, recognition of early cognitive impairment and referral to the appropriate specialised centres for accurate and early diagnosis will become vital if the patient is to obtain full benefit from such treatments. Until such drugs are available, the main role of the GP is to exclude the few treatable causes of dementia-like symptoms eg thyroid disease, space occupying lesions; and to identify and treat any comorbid conditions which are worsening the dementia eg depression, anaemia, infections, constipation. Palliative treatment of symptoms such as wandering, aggression or sleep disturbance is necessary, with support and advice to the carer. Some GPs with an interest in the elderly will do this themselves, others prefer to refer the patient to their local psychogeriatric or geriatric service.
Troublesome symptoms and their treatment.
1. Memory problems and disorientation.
Too often the carer will argue with the dementia sufferer, correcting their mistakes and sometimes becoming angry themselves. This can lead to the catastrophic reaction, aggressive behaviour or the development of depressive illness or social withdrawal. The relationship between patient and carer may become stressed to the point of breakdown. The carer needs advice on the pathogenesis of symptoms and behaviour, and support to come to terms with the implications. A support group with other carers is invaluable.
Aggression is more likely in a demented patient as disinhibition develops. It tends to be situational usually in response to confrontation or fear: Example: an elderly lady wishes to leave the house to collect her children from school. Being pulled away from the door or told she must not go out leads to frustration and anger culminating in an aggressive or tearful outburst. Look behind the aggression, talking through the reality that her children are now grown up may be beneficial, or distraction into other activities.
3. Sleep disturbance.
The elderly need less sleep but more rest than in their youth. The rest is best obtained in a comfortable chair, perhaps with simple activities or talking over shared memories used for stimulation of the brain. At night a comfortable bed and quiet environment is needed; a night light may reduce disorientation as the patient can recognise familiar surroundings when awakened. Sedation may be necessary to establish a sleep pattern. It is preferable not to use long term medication but this may be unavoidable. Use of stronger and stronger medication to try and produce ten or more hours sleep "to give the carer a rest" is counterproductive. The sedation will continue into the following day, increasing confusion and risk of falls, generally making the patient harder to look after.
Sudden onset of incontinence, often with a worsening of confusion is often a sign of a urinary tract infection or constipation. Incontinence may have a physical cause such as atonic bladder, stress incontinence or prostatic hypertrophy with overflow. The community psychiatric nurse (CPN), district nurse or local incontinence nurse will be able to give the carer advice on regular toiletting, incontinence pads and other aids.
5. Faecal incontinence.
Unless this condition can be speedily rectified eg consipation and overflow or diarrhoea, the carer may find it impossible to continue looking after the patient at home. Incontinence pads will help.
A common condition in the elderly, it can be minimised by a good diet, plenty of fluids and exercise. Mild aperients may be needed. In a patient with dementia, constipation can lead to urinary incontinence, faecal incontinence and a worsening of confusion often with irritability or aggression as well. This is thought to occur due to the pain and discomfort of the constipation.
7. Wandering and falls.
Safety and degree of acceptable risk needs to be assessed for each individual, and changes with time. Some exercise is important for general health, prevention of pressure sores and aid to sleeping. A home assessment should be arranged by the local community team or occupational therapist. Advice will be given to carers on the risks of small items of furniture, loose rugs, trailing wires etc. It may be possible to make a garden area safe for the patient to wander in. If she is able to open the front door and leave the house, advice on alternative locks or an alarm such as a shop type bell will reduce the need for continual observation. Falls can occur while wandering or be caused by postural hypotension or ill-fitting shoes. Painful feet lead to unsteadiness and a visit from the community chiropodist can be rewarding. Topographical disorientation, or "getting lost", both in the house or in the surrounding once familiar area is a sign of parietal lobe involvement in the dementia and points to the diagnosis of Alzheimers disease.
8. Communication difficulties.
Decrease in visual acuity is univeral with age. The condition is not static and an optician should check yearly that glasses used are still made to the correct prescription. Deafness is also common. Wax causing mechanical obstruction may need appropriate treatment, or a hearing aid be necessary. It is often difficult for an elderly person with arthritic hands to insert a small hearing aid. The type obtained should be chosen for ease of use rather than cosmetic appeal. Dysphasia may be mechancial due to lack of teeth or poorly fitting dentures. More commonly it is a symptom of the illness. Both receptive (lack of understanding of speech) and expressive (difficulty in finding or pronouncing correct words) dysphasia are seen. Use of pictorial charts to express basic needs may help.
This is a common but little recognised complication of dementia. Depression is sometimes seen as a prodromal feature of Alzheimers disease. More commonly it occurs during the dementing process, in some cases due to insight into what is happening. Dementia with insight is extremely distressing and frightening, to know one is losing ones intellect and memories and that as yet there is little treatment available. In the early stages of the dementia, suicide in response to this knowledge is not uncommon. In the later stages of dementia depression has a more organic basis, possibly by destruction of monoamine producing neurones. It presents with loss of skills, worsening of confusion especially in the mornings, social withdrawal or irritability and aggression. Diagnosis is not always easy, but if depression is a possibility a trial of treatment with a therapeutic course of antidepressants for at least eight weeks is worthwhile.
10. Psychotic features.
Mislaying and forgetting where possessions should be can lead to accusations of theft against carers or others. This can be upsetting and stressful to both the patient (as the accusation may be true) and the carer (as it may be false). If the accused person is a paid carer, for instance a Home help, such accusations are taken seriously and investigated fully, with much distress to the person concerned. Accusations may progress from single occasions to a complete paranoid delusional system. Medication to modify the beliefs is often required, eg. sulpiride, thioridazine. Care is necessary to prevent oversedation or other side effects reducing the patients abilities further, so medication used should be commenced in very low doses. Delusional patients tend to be more aggressive and behaviourally disturbed than others. Delusions and hallucinations, both visual and auditory are found in up to 25% of patients at stome stage (usually later) of their illness (Cooper et al 1991).
11. Failure to recognise family members and familiar surroundings.
As the confusion worsens the demented patient may remember their husband or daughter as they were 20-30 years earlier, and misidentify a son as a husband or refuse to accept that the carer is not a stranger. They may no longer be familiar with their surroundings, continually trying to go "home". The carer will need support and counselling to help come to terms with this feature. It does not recover and is often the time when residential placement becomes appropriate.
It is possible for a demented patient, even if in residential care, to become malnourished. Quantity eaten tends to become smaller so it is important that quality goes up. Poorly fitting dentures (or lack of them), the presence of a sweet tooth, convenience ("less messy" "she can feed herself sandwiches") or poverty, lead to a poorly balanced diet of sandwiches and puddings. Lack of protein, vitamins and iron most commonly cause anaemia but other deficiency diseases are seen. Food intolerance is also common because of decreased gastric motility and slower emptying time; rich or fatty foods may cause stomach upsets or diarrhoea. Advice from a dietician and presciption of food supplements may be required.
13. Intercurrent illness.
Infections, especially UTIs and chest infections tend to cause rapid worsening of confusion, sometimes to the extent of an acute or chronic confusional state. Antibiotic treatment has dramatic results. Other illnesses, malignancy, osteoporosis, cardiovascular and cerebrovascular disease are frequently seen, as would be expected in a population of this age group. Treatment should be given as appropriate. In the later stages of a dementia invasive investigations should not be considered unless pathology found will be treated.
Epileptic fits can occur, tending to be seen earlier in the disease process in multi infarct dementia. Treatment is the same as for epilepsy from other causes.
Problems of the carer:
The carer, if a spouse is likely to also be elderly and possibly with poor physical health. If the carer is a child they may have family responsibilities such as dependent children, producing divided loyalties and sometimes marital conflict. The carer may live a distance away and suffer financial problems from travel expenses. There may be embarrassment caused by the reversal of roles, especially if caring for the personal hygiene of a parent of the opposite sex. Lack of insight and knowledge of the progress of dementia, which symptoms can be modified and how to obtain help, can all be remedied by introducing the carer to a support group such as Age Concern and the Alzheimers Disease Society.
Help for carer:
Caregiving is hard work and is usually considered a professional activity. Amateur carers are untrained so it is not surprising they make mistakes such as using restraint to prevent behaviour (eg locked doors or request for sedation) rather than environmental or psychological management. Brodaty (1992) suggests that training should be comprehensive, tailored to individual needs, and continuing through the different phases of the illness. A joint report by the RCP and RCPsych (1989) suggests that for the massive issue of dementia, the emphasis should be on support of carers. Attention should be given to "those aspects which wear carers down such as restlessness, aggression, disturbed nights and incontinence", together with complicating problems such as depression in patient or carer. The report describes the role of the CPN as monitoring and support, counselling, helping with practical, financial and emotional difficulties, and advocacy on behalf of the patient and families. However one must beware the tendency for paternalistic control. Where a patient is incapable of consent, relatives should be consulted closely at every stage of treatment. But when a patient is capable of making certain decisions it is both unnecessary and stigmatising to wish to confirm the decision with a relative (Murphy 1986).
1. In the home: The Home Help Service can reduce the amount of work necessary in the house, leaving the carer more time to spend with the patient. Some districts run schemes where paid or voluntary carers come to the house and stay with the demented patient while the carer goes out, or take the patient out for some hours giving the carer time alone in the home.
2. Outings: many voluntary and statutory groups are able to arrange outings, either day trips or even holidays, for the carer and patient, to give interest and stimulation to them both.
3. Day care: Social Service departments and voluntary services run day care schemes in all areas. It is usually possible for transport to collect and return the patient, although sometimes the carer may do this. If there are major problems with physical dependency or behaviour such as aggression, day care may be provided by the psychogeriatric day hospital which has a higher number of staff, including nurses trained to deal with such problems.
4. Respite care is overwhelmingly described as useful and necessary to maintain dementia sufferers in the community. Such reports, although anecdotal, are sufficient in number to compel belief. Empirical data to support this view has not yet been produced (Brodaty 1992) but this is probably because of the great diversity of reasons for respite, and also variety in the type and frequency of respite provided.
5. Residential care, in voluntary, private or statutory institutions frequently occurs during the final stages of the illness. The needs assessment is performed by social services, but all professionals involved with the patient should work together to ensure the right decision on time and type of placement is made, to prevent need for re-placement at a later date.
6. Bereavement: The death of a dementia sufferer may be regarded by some as a "release", but to the carer it is the stage when all hope for improvement or cure is inevitably lost. What was possibly a complicated care package involving various professionals making frequent contact suddenly stops. Families caring for dementia sufferers, especially the spouse, tend to give up many of their previous social activities, all their energy being invested in caring. The community nurse and day centre staff will be known and trusted, but suddenly contact with them is lost. Contact with the bereaved carer must be continued, both through the initial grieving and then to ensure social contacts with others are in place. Once again, carers support groups continue to involve bereaved carers in all activities for as long as they wish.
7. Financial: The patient and his carer may be eligible for various benefits such as attendance allowance and income support. Method of application (not all are means tested), is usually through the local social services. Attendance allowance is not means tested.
Legal Involvement(UK situation): As the confusion worsens with time, the patient will eventually become incapable of managing his or her own affairs. Power of Attorney: This is a third party mandate, where permission has been given for someone else to manage his affairs. It is not suitable for dementia sufferers as the validity ceases as soon as the patient becomes incapable of understanding and consenting to the mandate continuing. Enduring Power of Attorney: This was created by an Act of Parliament in 1985. The current version of a prescribed form must be used - a solicitor's aid is valuable to deal with the complexities. The power is not invoked until the patient becomes incapable. The attorney must apply to the Public Trust Office for registration when they have reason to believe that the patient is or is becoming mentally incapable. A registration fee is payable. Notice of intention to register is given (by post) to the patient and to at least three relatives in order of closeness, so they have a chance to object. There is no power over the person so the attorney cannot dictate where the patient shall live though control of the money inevitably gives influence. Court of Protection: Part of the Mental Health Act 1983. This is financed by those who use it, a fixed percentage of the estate is charged every year. Applications including a medical certificate are submitted to the Court which needs to be satisfied that the person, by reason of mental disorder is incapable of managing his own affairs. It is a complex procedure involving solicitors, with continuing cost while in use, but providing a high degree of supervision of the receiver appointed. The Court also has the power to authorise the signing of a will on behalf of the patient if this is thought appropriate.
Because of the higher incidence of treatable causes and the possible need for genetic counselling such patients should be rapidly referred to the district service specialising in this field, usually neurology or psychogeriatrics. Support for the family, especially if there are dependent children is vital but often multiagency. A coordinating multidisciplinary service is thus of benefit, the local psychogeriatric service, or adult psychiatrist with an interest in this subject, is often best placed for this.
An increasingly recognised problem, abuse can be physical (including sexual), psychological, or financial. Suspicions of any form of abuse should be brought to the attention of the local social service department to investigate. Some abuse is the result of an overstressed carer, and extra support into the home or respite arrangements may help.
Useful addresses (UK only):
Alzheimer's Disease Society, 2nd Floor, Gordon House, 10 Greencoat Place, SW1P 1PH. Tel: 0171-306-0606.
Age Concern, Astral House, 1268 London Road, Norbury, London, SW16 4ER. Tel: 0181-679-8000.
Carers National Association, 20-25 Glasshouse Yard, London, EC1A HJS. Tel: 0171-490-8818.
Chatterjee, A, Strauss, M E, Smyth, K A, Whitehouse, P J. (1992) Personality changes in Alzheimer's disease. Arch. Neurol, 49, 486-491.
Cooper, J K, Mungas, D, Verma, M, Weiler, P G. (1991) Psychotic symptoms in Alzheimer's disease. Int J Ger. Psychiatry, 6, 721-726.
Murphy, E. (1986) Dementia and mental illness in the old. Papermac.
Royal College of Physicians of London and Royal College of Psychiatrists. (1989) Care of elderly people with mental illness; specialist services and medical training. London, RCP and RCPsych.
Saunders, P. (1993) Epidemiology of mental disorder in old age: GMS-AGECAT studies. Advances in Old Age Psychiatry, 4, 1-2.
All pages copyright ©Priory Lodge Education Ltd 1994-1999.