Carers of people with dementia

Problems with provision

Care, and in particular care of the elderly and the mentally ill, is supposed to be high on the list of priorities in today's health and social services. But the experiences described by carers of patients with dementia demonstrate serious gaps in the service provided (see ‘Assessments and care plans').

Several carers suggested that what they needed was for there to be a care manager who would be responsible for the detailed understanding of the circumstances of each person requiring care and the ability to ensure that it was provided from the appropriate source. As one carer described, this person should be able to anticipate the problems that are likely to arise so that there does not have to be a crisis.

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Another suggestion was that a person at home with dementia should be assigned a Community Psychiatric Nurse (CPN) who would make regular visits where they could assess the state of affairs and be able to predict the possibility of impending breakdown in the arrangements before a crisis arose.

Failure to communicate within the services causes unnecessary confusion for carers. Failure to point them in the direction of the invaluable sources of advice and support outside the health services leaves them deprived of help. All those who had benefited from advice and support organisations agreed it made an enormous difference to the quality of life both of the person with dementia and of their carers. Many doctors have little real knowledge of the problems associated with caring for dementia but they should make the effort to make sure they refer people to the agencies that do have this knowledge.

Failure to liaise effectively can result in delays, misunderstandings and actual damage to the patient's health. Carers have their work cut out caring, but several carers described how they also had to fight to get essential equipment and to overcome intolerable delays in delivery. In this case the item required was expensive and while that doesn't excuse the failure to get a move on it may be one reason why this happened.

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Seemingly ridiculous bureaucratic complications could also mess up the provision of much more mundane items. Incontinence pads, which are incredibly important both for relieving some of the laundering problems of the carer but also for protecting an immobile person from skin damage, were sometimes unavailable for a newly incontinent person being discharged from hospital because they had to be ordered through social services and there was a 6 week delay. One carer said that she was rationed to 5 pads a day which was nowhere near sufficient for her husband, but that after he had died, no-one was prepared to remove unopened packets of pads which hadn't been used.

Other items essential to the care of a bedridden patient took months to arrive. Until a suitable hoist could be installed one carer was unable to lift her husband even with help from another person. She had to choose whether to risk serious injury trying to lift him on her own or accept defeat and allow him to be admitted to hospital with the risks, and expense to the NHS that that involves.

Some of the most difficult caring problems occur with younger people suffering from frontal lobe dementia. While often physically fit and active they may sometimes be very difficult to look after because of extremely agitated behaviour including sometimes violence towards others including their carer. These cases are relatively rare and it is often incredibly difficult to find any facility which can cope. Often the carer who is a husband or wife is anxious to keep such people at home but is made desperate by the inability of day care centres to understand and cope with the problem of the young agitated person with dementia.

There was a strong suspicion among carers based on their experiences that the quality of care suffered when social services decided to privatise some of their provision. Their complaint centred mainly on the home carers but also concerned carers in nursing homes. There was a feeling that there was no effective training and that many nurses and carers had little experience and no understanding of the problems of people with dementia.

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Considering the enormous benefits provided by carers, removing as they do much of the burden which otherwise would have to be carried by the health services, it is shocking how many gaps there are in the support available for carers.

In February 2009 the Department of Health launched ‘Living Well with Dementia' A National Dementia Strategy’ to be implemented over a five-year period to 2014. It sets out 17 objectives for transforming dementia services, with the aim of achieving better awareness of dementia, early diagnosis and high quality treatment at all stages of the illness and in all settings. Since the National Dementia Strategy was launched in 2009 there have been many improvements in the care and support of people with dementia across the country. However services differ across the country and many are not yet able to access improved support.

Last reviewed March 2015.

Last updated March 2015.

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