Incontinence

Dementia in the elderly roughly doubles the risk of urinary incontinence. (35* To minimize incontinence, toilets should be easily identifiable and readily accessible. Clothing may need attention to ensure that it is easy to remove. If urinary incontinence is present then reversible causes, such as urinary tract infection, constipation, and medication (such as diuretics or drugs with anticholinergic side-effects causing urinary retention and overflow) should be excluded.

A diary recording frequency of voiding on the toilet and frequency of incontinence should be kept to see if toileting times can be adjusted to minimize incontinence. Prompted voiding (asking the person hourly if they want to go to the toilet and giving praise for successful toileting) is effective for some individuals. (36) A behavioural programme may be needed for the patient who urinates or defecates in inappropriate places.

If incontinence persists get the advice of a continence advisor before considering drug treatment. Carers

Support for the family and carers starts with education about the cause of the dementia, the possible prognosis, and the symptoms—both current and those which may develop. They may want to discuss the risks to other members of the family. Family and friends need to understand that cognitive and behavioural symptoms arise from damage to the brain and are part of the illness.

Carers need advice on the principles of care, for example ensuring that communication is simple and direct, avoiding changes to routine, not arguing with the patient, but on the other hand not endorsing false beliefs. They will need guidance on when and how to call on professional advice. Addresses of self-help groups, and the address of information on the Internet, should also be available (e.g. http://www.deme Carers may need help to obtain appropriate citizens advice, help at home (including cleaning, nursing, and meals-on-wheels), as well as legal and financial advice.

If a behavioural programme is being set up then consider what role the carer is going to take; it is difficult to be both a partner and a therapist. Also be aware of potential conflicts of interest. Sometimes it will be inappropriate for the next of kin to have control of the patient's money.

The burden of caring for someone with a dementia may result in depression and other signs of stress. The carer should have the opportunity of talking about any problems they have, if necessary getting their own psychiatric care. Improving the mental health of the carer may reduce the likelihood of institutional care for the patient.

A systematic review of various interventions designed to support carers of people with Alzheimer's disease found little evidence that any of them actually work. (37) Offering spouses help in coping with the disease was found to be effective in one study. Overall the authors of the review concluded that the evidence was inconclusive and did not warrant withdrawal of services providing carer support.

A caregiver's handbook, giving excellent advice to carers, is available on the Internet (.h.tt.pi//w.ww..^ The handbook ends with a discussion of when it is time to stop and hand over to institutional care; this sensitive issue should be raised with the carer well in advance.

Carers who are under stress are probably more likely to abuse, either physically or emotionally, the person with dementia. Try to ensure that any physical and emotional abuse of the demented person is picked up early. It helps if everybody involved in the person's care knows how to report any concerns they may have about what is happening.

Ensure that professional carers are well supervised and that their employers comply with local standards. Service provision and liaison General principles Health services

Neurologists, geriatricians, old age psychiatrists, medical rehabilitation physicians, as well as general adult psychiatrists, all may be involved in looking after patients with dementia. It is therefore useful if protocols for management are drawn up locally, for example defining who will look after patients with presenile (that is to say an onset before 65 years of age) progressive dementia, or patients with dementia following from brain injury in adult life. Alcoholic dementia is particularly likely to cause debate amongst local professionals. Such debates are best answered by matching the patient's needs to the skills and support that can be offered by the various services. General practitioners may wish to take a central role in dementia care. (38>

Social and other services

Social workers play a major part in dementia care. They will need to advise both the patient and family about financial entitlements and opportunities for support, for example at local day centres or using carers coming into the patient's home. Respite and long-term residential care will need to be considered. They are likely to be partly responsible for ensuring the quality of residential care, for example checking that local registration requirements are met.

Social services may provide a link with self-help organizations, advocacy services and, for the younger patient with dementia, employment services.

An integrated dementia care system

Local health and social services, and other interested parties including those from the voluntary sector, should work together to define the local strategy for dementia care(39) (TabieS). The strategy for younger adults with dementia (usually arising from a single-incident acquired, brain injury) will be very different from that for older people with dementia who will usually have a progressive disease. Appropriate funding arrangements may be the key to ensuring good liaison between services, for example by defining a joint pool of funding which services only have access to if they are working together.

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Table 3 An effective dementia care system

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