VOL: 98, ISSUE: 48, PAGE NO: 30
Graham A. Jackson, MB, ChB, MRCPsych, MRCGP, is consultant old age psychiatrist, Leverndale Hospital, Glasgow
Previous articles in this series have considered the common forms and features of dementia and the types of brain damage that cause the different types of dementia. Behaviour problems and assessment criteria that confirm a diagnosis of dementia have also been discussed. This final Part discusses issues of care that arise for both carers at home and healthcare professionals generally, emphasising the importance of ensuring that care is always person-centred.
The patient’s right to know
People with dementia, particularly in its early stages, are aware that something is wrong, and health professionals should not deal with this by making well-meaning platitudes. All patients with dementia have the right to know their diagnosis and, at the same time, their relatives or carers should be informed. Any discussion should offer a cautious optimism that progression might be slow.
The availability today of cognitive-enhancing drugs has contributed to the need to discuss the diagnosis and to explain to patients why particular drugs may be prescribed for them and why, in some cases, they are not being offered.
Sharing with patients their diagnosis offers them reassurance and gives them the opportunity to put their affairs in order, such as looking at granting a power of attorney, of making a will or making decisions about their future care.
A huge debate is currently taking place by the government and health and social care bodies as to whether or not care of older people should be funded by the state. Although some of the argument is about costs (or at least perceived costs), it is likely that if the discussion were about children or other young adults there would be fewer disagreements. Discussions are also continuing about the funding of anti-dementia drugs. It does seem that society is unwilling to pay a realistic rate for the care of older people who are unable to care for themselves because they have dementia. Such treatment is really a form of abuse.
Abuse is not necessarily physical harm or neglect - it may also be financial; for example, although we may see people being cared for by an able private carer who is helpful and supportive, the amount of money being charged for that care may be excessive. Furthermore, treatments may sometimes be given that lead to a lack of respect or to loss of dignity. Abuse of older people with dementia is probably fairly common, although it often goes unrecognised (DoH, 2000).
It is important to be aware of the possibility of abuse in any of its forms, since those with dementia are unable to speak out on their own behalf or, indeed, to recognise that they are being abused.
Drugs for dementia
The development and licensing of anticholinergic drugs has led to major changes in the management of dementia. The first of these drugs, donepezil (Aricept) was licensed in 1997 and this has been closely followed by two others, rivastigmine (Exelon) and galantamine (Reminyl). There does not seem to be a great deal to choose among them in terms of efficacy, although they have different side-effects. Donepezil is administered once daily whereas the other two are twice-daily; there may be some advantage, therefore, in using the former. Another advantage of donepezil is that dose titration is simpler. However, patients often tolerate one of them better than the others. A fourth drug, memantine (Ebixa), with a different mode of action has just been launched.
At present, these drugs are licensed only for the treatment of dementia due to Alzheimer’s disease. They are not licensed for use in vascular dementia, or in dementia with Lewy bodies. Accurate diagnosis is, therefore, essential. Currently, it is not entirely clear where a mixed Alzheimer’s disease/vascular dementia fits into the picture.
Unfortunately, the availability of these drugs varies in different parts of the country, resulting in what is commonly known as ‘postcode prescribing’. The National Institute for Clinical Excellence has recommended that the drugs should be available widely and consistently (NICE, 2001), but this is not yet the case. The Institute recommends that the drugs should be used where there is a diagnosis of Alzheimer’s disease and where the mini-mental state examination score (see Part 3) is above 12/30.
Prescribing should be for three months in the first instance (once the highest tolerated dose is reached), and the patient should be reassessed at this stage. If there is an improvement in daily living skills and/or of at least two points on the mini-mental state examination score, the anticholinesterases can be continued. There are various estimates of how many people will benefit but, generally, up to 50 per cent continue to be prescribed the drugs. Side-effects such as nausea, vomiting, diarrhoea and agitation may lead to their being stopped.
It is known that the cholinergic neurones of the brain are the ones most affected by Alzheimer’s disease, hence the development of anticholinesterases. These act by enhancing the action of acetylcholine, so slowing its breakdown. It follows that, in more severe illness, they are less effective, since the amount of acetylcholine in the brain is greatly diminished.
Other neurotransmitters are involved in cognitive function, therefore acetylcholine is only part of the picture. Nor is the relationship between different transmitters understood. These drugs have no effect on the disease process, so deterioration continues. In some cases, the drugs provide a temporary reversal of some of the cognitive decline, but this is rarely dramatic. Nevertheless, even minor improvements to memory which prevent constant telephoning of relatives, help patients to remember to eat or to take medication, or to dress themselves with no (or less) help, can make life better both for them and their carers. There is some evidence that hallucinations, delusional ideas and some behaviour disturbance may get better.
Ideally, a drug for dementia should prevent decline in a patient’s cognitive function; that is, it should be neuroprotective. Various agents have been suggested, including oestrogen; antiarthritic drugs such as ibuprofen; selegiline; nerve growth factor and, more recently, statins (drugs which lower lipid levels), and dietary antioxidants such as Vitamins C and E.
Nerve growth factor is known to maintain neurones, so work here is looking promising. At present, it is proving difficult to produce in an easily administerable form. Research on rats has involved direct infusion into the brain. Other suggested treatments have included the herbal preparation Ginkgo Biloba. At another level, research is continuing into a vaccine for Alzheimer’s disease, targeting amyloid formation.
Treatment of other forms of dementia is not yet available. In terms of vascular dementia, lowering of recognised risk factors for vascular disease should, at least, theoretically, be of benefit. Thus, lowering weight, reducing cholesterol level, controlling high blood pressure, stopping smoking and effective control of diabetes may help.
There is some evidence of benefit from anticholinesterases, and memantine may offer some neuroprotective effect, exerting its effect via another neurotransmitter (glutamate).
Specific drugs for frontotemporal dementia and dementia with Lewy bodies have not been developed. Although the anticholinesterase drugs are not licensed for these conditions, they are sometimes tried and may, theoretically, be of benefit to those with dementia with Lewy bodies.
Treatment for the cognitive impairment of dementia thus remains in its infancy. Management relies on providing good quality assessment, appropriate and good quality care - both of which should be readily accessible - and support both to those who have dementia and their carers.
Two-thirds of people with dementia live at home and a third live in institutional care of some kind. Of those living at home, about one-third live alone; many of the others live with a spouse (who may have his or her own health problems), with a sibling or with a lone child - who is often an older person.
Some patients have relatives or other carers who can act as advocates; that is, they are able to seek appropriate help and to help the patient make choices. People with dementia who live alone may become very isolated in the community, and it is common for such people to come to the attention of doctors or social services only when a crisis occurs. The combination of a lack of knowledge about the previous abilities of a person with dementia and pressure to deal with a crisis can lead to wrong decisions being made about moving a person into hospital or other care. It is important, therefore, to detect dementia in its early stages.
But it is not enough to diagnose dementia and then leave people to their own devices. Knowing the diagnosis can bring on fears, and questions, and expectations of a changed future for both patient and relatives. Various models of support groups have developed, run by some (or all) of the agencies discussed below. Carer support is, of course, very important, and has generally been around for some time, but support to those with the diagnosis is still in its infancy. Such support must include education: knowing what is happening helps to empower people. Providing such education in a group setting allows for peer support and discussion of feelings and worries with others in a similar position.
Carers who know how to access help and know that it is available from a local and empathic service will be able to help their relatives with even fairly advanced dementia to remain at home.
The providers of support fall into one of four groups, although these services should work together as much as possible.
1. Social services
These are provided by the local authority and are of prime importance. Such services include home helps, meals-on-wheels, befriending services, advocacy services, respite care (which may be home- or residential/nursing home-based), day care, and assessment for longer-term care. Access can also be provided to financial help. People with any disability that requires help with daily living activities are entitled to benefits such as disability living allowance or attendance allowance. A diagnosis of more than very early stage dementia should mean that attendance allowance is granted.
2. Voluntary sector
The types of help available in the voluntary sector vary in different parts of the country. There are formal agencies such as the Alzheimer’s Society, Alzheimer’s Scotland, and Action on Dementia, but there are also a large number of other local groups that often run support groups, organise teams of volunteer drivers and befriending services, among a host of other activities.
3. Private sector
The private sector tends to be recognised as a provider of care in nursing and residential homes, although many care homes also provide day care and there are groups available that can provide home-based care and sitter services, and even home nursing. With increasing inflexibility in what employees of local authorities are able to offer, for example the duties of home helps have changed, the private sector is increasingly being used by those who can afford it.
4. State care
The National Health Service offers a diagnostic and treatment service together with aspects of care related to current legislation. For example, the National Service Framework For Older People (DoH, 2001) states that there should be a single shared assessment of needs. Such a system will require much more integration of psychiatric, medical and social work services than exists at present. Psychiatry is far ahead of medicine, at the moment, in providing a care package of services: medical care tends to be almost entirely hospital-based, with ongoing support left in the hands of the GP. Psychiatry, on the other hand, is largely community-based, providing regular support from consultant-led teams that may include psychologists, occupational therapists, and community psychiatric nurses. The ideal model would be one service that would provide support and advice to patients and their carers from the time of diagnosis to the point of entry to long-term care, or even beyond.
Much has been written about the medical and social models of dementia, some of which has implied that these are different ways of looking at dementia - one as a disease model and one as a disability. Some of these differences are described in the late Tom Kitwood’s excellent book, Dementia Reconsidered (Kitwood, 1997). Kitwood describes the medical model as the ‘standard paradigm’, and argues eloquently that it is the wrong model. In this series on dementia I have considered dementia in terms of the standard paradigm. I make no excuse for this, because dementia is an illness that causes a progressive decline in cognitive abilities. There are demonstrable changes in the brain. It is, however, very important to remember that we are treating a person with dementia. How the condition presents will depend very much on patients’ personality, on their relationships with others, and on who they are.
People with dementia have had a full and varied life prior to its development and it is important always to remember this when providing care. Sadly, the days of providing warehouse-type care are not yet entirely over. Homes still exist where all the residents get up at the same time, wear similar clothing, are toileted by rote, and get little or no choices in their lives. Visiting times are still regimented in some homes, and rules and regulations are to suit carers and not the ‘inmates’ (as they are regarded). All contact with carers is task-oriented in such places - there is seen to be no time simply to sit and chat. But social contacts are essential for people with dementia, particularly as their ability to seek this out becomes greatly reduced.
The main difference between the standard paradigm and Kitwood’s alternative is that the former looks at the course of dementia, whereas the latter looks at the person as he or she is now. Both are essential in order to provide good quality care.
Many healthcare professionals will be involved in the care of people with dementia and will, in many instances work with carers in the patient’s own home. It is a syndrome that has different forms and therefore requires different modes of treatment. Assessment is an important part of forming a diagnosis.
Because people with dementia have cognitive loss they are vulnerable to abuses in care. Abuse is not necessary physical - financial abuse and abuse of personal dignity are also common though not always immediately obvious. Those caring for patients with dementia must therefore be ever vigilant, and ensure that, at all times, the person is at the centre of his/her care.
Next series: Sexual health