Carers of people with dementia

Assessments and care plans

The GP, Social Care and the Community Mental Health Team or Memory Clinic work together to ensure the person with dementia and their carer’s needs are met. This may involve assessments of the person with dementia in their home, perhaps by occupational therapists, nurses and/or social workers; they may also offer a separate “carer’s assessment” to see if the carer can be supported in their own right. Services offered may include aids and adaptations in the home, respite care, home care, meals on wheels, day care, residential care and nursing home care. Social services have a duty to arrange to meet the needs that they identify, whether the person is living in their own home, with a relative, or in residential care. A care plan is written to describe the needs and the way that they are to be met. It should be reviewed regularly, especially when the situation changes. (See Alzheimer’s Society factsheet 'Community care assessment' for more details of what is available and how to apply).

The first step in arranging a care plan is to have an assessment carried out. The person's GP should be involved and will often start this process, and the local social services department will be able to supply details to the family carer about how to apply for an assessment. Having the assessments done can be a rather worrying time for the carer as well as for the patient. However an elderly man commented that he was impressed with the careful and skilled questioning by a geriatrician.

Carers we talked to were often confused about the professional responsibilities of the various health, social service and voluntary sector people who were involved with their relative. People were particularly confused about the responsibilities of hospital social workers (who are not employed by social services), occupational therapists (who sort out adaptations to the home) and about the boundaries between health and social services.

A daughter could not understand why her mother was unable to leave hospital with a supply of continence pads and was expected to wait 6 weeks for a visit from the continence advisor. Many complained that the professionals seemed to assume that they knew how everything worked, yet it was common to feel completely at sea. Several said they could not believe how slow the system was. Sometimes by the time a solution was found the situation would have changed to the extent that it was no longer applicable (e.g. an adaptation at home would be offered after the person had gone into residential care). A woman who had separated from her husband explained that she was content to help with his domestic tasks but felt that he needed some company from other people.

The amount of support that is available depends not only on the assessment of the person's needs, but also on what is available locally through social services, health and the voluntary sector. Some carers compared notes with people in other parts of the country and concluded that the provision in their authority was less generous. One woman described her experience of challenging the assessment and getting a care plan she believed was more appropriate to her husband's needs.

Sometimes the carer spent many hours working out a tight package of care, only to find that one part of the jigsaw fell apart almost immediately. A woman who had been counting on a day centre for her mother found that her plans were scuppered when the centre said they could not cope with her. Even when a care package works well it can still leave a lot of responsibility on the carer.

When a carer feels supported by a care plan this can have a positive effect on their relationship with their partner or relative. A wife describes how the NHS funds her husband's care plan and how her life and relationship with her husband has been transformed. (See 'Home carers').

In February 2009 the Department of Health launched ‘Living Well with Dementia' A National Dementia Strategy’ that was 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.The following objectives are quoted from that strategy'

•    Objective 3: Good-quality information for those with diagnosed dementia and their carers. Providing people with dementia and their carers with good-quality information on the illness and on the services available, both at diagnosis and throughout the course of their care.

•    Objective 4: Enabling easy access to care, support and advice following diagnosis. A dementia adviser to facilitate easy access to appropriate care, support and advice for those diagnosed with dementia and their carers.

•    Objective 5: Development of structured peer support and learning networks. The establishment and maintenance of such networks will provide direct local peer support for people with dementia and their carers. It will also enable people with dementia and their carers to take an active role in the development and prioritisation of local services.

•    Objective 6: Improved community personal support services. Provision of an appropriate range of services to support people with dementia living at home and their carers. Access to flexible and reliable services, ranging from early intervention to specialist home care services, which are responsive to the personal needs and preferences of each individual and take account of their broader family circumstances. Accessible to people living alone or with carers, and people who pay for their care privately, through personal budgets or through local authority-arranged services.

•    Objective 7: Implementing the Carers’ Strategy. Family carers are the most important resource available for people with dementia. Active work is needed to ensure that the provisions of the Carers’ Strategy are available for carers of people with dementia. Carers have a right to an assessment of their needs and can be supported through an agreed plan to support the important role they play in the care of the person with dementia. This will include good-quality, personalised breaks. Action should also be taken to strengthen support for children who are in caring roles, ensuring that their particular needs as children are protected.

Since the National Dementia Strategy was launched in 2009 there have been many improvements in the care and support of people with dementia and their carers 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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