Assessments and care plans for carers of and people with dementia

In the UK, 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 should involve assessments of the person with dementia, which may take place in their home, perhaps by occupational therapists, nurses and/or social workers; they should 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’ (regular deliveries of prepared food), 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 factsheets: Assessment for care and support in England’, ‘Assessment for care and support in Wales’, and ‘NI 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. A carer can also request an assessment directly for the person with dementia, with their consent, and can also request an assessment for themselves for their caring needs.

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.

She was surprised how long everything took to arrange, but impressed at the way questions were asked by the geriatrician.

Age at interview 80

Gender Male

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Carers we talked with 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, for example 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.

Says that the different responsibilities of professionals are poorly explained and that services can be inefficient.

Age at interview 75

Gender Male

Age at diagnosis 67

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Felt that help with company and activities for her ex husband would have been more useful than domestic assistance.

Age at interview 63

Gender Female

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The amount of support that is available depends not only on the assessment of the persons 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.

Describes making a complaint about her husbands care plan. Describes digging her heels in when she felt her husband wasn’t getting the care he needed.

Age at interview 52

Gender Female

Age at diagnosis 57

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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.

Her mother’s care plan did not work when the day centre, and eventually the home carers, said they could not cope with her.

Age at interview 53

Gender Female

Age at diagnosis 61

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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).

Describes how a good care plan has transformed her life and her relationship with her partner.

Age at interview 62

Gender Female

Age at diagnosis 61

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NICE guidelines [NG97] June 2018 Dementia: assessment, management and support for people living with dementia and their carers, recommends:

Care coordination

Provide people living with dementia with a single named health or social care professional who is responsible for coordinating their care.

Named professionals should:

  • arrange an initial assessment of the persons needs, which should be face to face if possible
  • provide information about available services and how to access them
  • involve the persons family members or carers (as appropriate) in support and decision-making
  • give special consideration to the views of people who do not have capacity to make decisions about their care, in line with the principles of the Mental Capacity Act 2005
  • ensure that people are aware of their rights to and the availability of local advocacy services, and if appropriate to the immediate situation an independent mental capacity advocate

They should develop a care and support plan, and:

  • agree and review it with the involvement of the person, their family members or carers (as appropriate) and relevant professionals
  • specify in the plan when and how often it will be reviewed
  • evaluate and record progress towards the objectives at each review
  • ensure it covers the management of any comorbidities
  • provide a copy of the plan to the person and their family members or carers (as appropriate).

Last reviewed: November 2023