Signposts to support: Understanding the special needs of carers of people with dementia

Executive summary

1. Introduction
1.1 The report has been produced as part of the Dementia Carers Project, funded by the Scottish Executive under the Carers Strategy for Scotland. It is based on an extensive literature search on the special needs of carers of people with dementia and of specific sub-groups of carers.
1.2 There are at least 29,000 carers providing a regular and substantial amount of care to someone with dementia in Scotland.
1.3 Caring for people with dementia is a very different from caring for people affected by other types of disability.
1.4 Individual situations will influence carers’ ability to care and the support they require: the characteristics of the person with dementia, relationship to the cared-for person, the carer’s health, coping skills, other caring duties, socio-economic status, cultural factors and the availability of other informal support and formal care.

2. Why is caring for someone with dementia different?
2.1 Caring for someone with dementia is different because of the complex, unpredictable and progressive nature of the illness. Complex care needs include intimate personal care as the ability for self-care declines, increasing levels of supervision, emotional support, decision-making, behaviour changes, coping with the risks to safety, personality changes and changes within the relationship.
2.2 Dementia has a profound emotional and psychological impact on the person with dementia, leading to stress on carers and the need for support in responding appropriately to the person with dementia.
2.3 The extra costs of caring are substantial for many carers. There is evidence that this extra expenditure is greater for carers of older people with dementia than for carers of those without dementia. The presence of dementia was also associated with a high level of unmet need for mainstream medical services and domiciliary support.
2.4 Positive aspects of caring, including appreciation of the person and of the activities that can still be shared, and a sense of satisfaction and expertise, should be fully recognised and taken into account.

Carer stress and dementia
2.5 Carers of people with dementia suffer from high stress levels and, compared with non-caregivers, are more likely to take prescribed medication, visit their GP and report higher levels of stress and physical symptoms.
2.6 The most dominant causes of stress in carers are psychiatric symptoms and behavioural disturbances in the person with dementia (which may be even more common in younger people with dementia), and not the degree of cognitive impairment or difficulties with activities of daily living.
2.7 Other predictors of high stress levels include: the amount of formal and informal care available, the carer’s physical and mental state, and their personality and coping style. The emotional relationship between the cared-for person and the carer is also seen as a key factor when the carer is faced with difficulties.
2.8 A diagnosis disclosed to the carer and not the person with dementia often increases carer stress.
2.9 Carers often feel unheard by health and social care professionals.
2.10 There is a need to provide more practical support for carers who have to work, as well as counselling and education to assist relieving the emotional stress of care giving.
2.11 There is an increased risk of depression in carers of people with dementia, particularly for women, those over 65, co-resident or next of kin to the person cared for; prevalence is estimated at 30-50%.
2.12 Spouses and children had significantly higher odds of high depression scores than other caregivers.

3. Effective support for carers of people with dementia
3.1 There is evidence to show that interventions aimed at individuals and families significantly reduce stress.
3.2 The full range of resources needed includes assessment, information, early support and counselling, education and training, therapeutic interventions for challenging behaviour, carer support groups, advocacy services, short breaks/respite care, day care and day opportunities, home support services, environmental approaches and crisis intervention services.

Recommendations

3.3 Planners should ensure the provision of the full range of core resources needed by carers of people with dementia.
3.4 Joint professional assessment of the needs of both the person with dementia and the carer should be provided, and should include the input of community psychiatric nurses and clinical psychologists as appropriate.
3.5 Services must be flexible in order to respond rapidly to changes in carers’ needs and those of the person they care for, including short term or emergency variation, and must be regularly reviewed by care managers with expertise in dementia.
3.6 Commissioners, providers and service managers, as well as inspection teams should ensure that measures of performance are developed to ensure that the needs of people with dementia are met and must provide carers with information on standards so that carers can feel confident in services.

4. The special needs of specific groups of carers of people with dementia
4.1 It is vital that the additional particular needs of specific groups of carers are recognised by service planners and providers. Carers may face additional disadvantage due to their circumstances or those of the person they care for, and this report focuses on and makes specific recommendations about the needs of six groups.
4.2 Between 800 and 5,000 young people in Scotland under 18 care for someone with dementia; they may not recognise themselves as carers, and face isolation, problems with school, lack of appropriate carer assessments and conflicts as life changes reduce the time available for caring while the pressures and demands of caring for a person with dementia increase as the disease progresses. There are also many young ‘secondary carers’ whose lives are affected by their relationship to a person with dementia such as a grandparent.
4.3 There are between 110 and 690 people with dementia from non-white minority ethnic backgrounds in Scotland. There are also about 4,000 people with dementia from white national-origin minority groups. Most (but not all) of their carers will be from the same ethnic background. Minority ethnic carers face delays in seeking and problems in obtaining information, diagnosis, assessment and services because of communication barriers, cultural differences and inappropriate assumptions that may be made by service providers.
4.4 There are an estimated 1,440 to 4,930 lesbian, gay or bisexual carers of people with dementia in Scotland, and at least 2-3 transsexual people caring for people with dementia. Stigma and discrimination may prevent them from accessing resources, and services may act inappropriately due to a lack of understanding or acceptance of their sexuality or gender identity. In the absence of the right to marry or register their partnership, same-sex partners may lack recognition by services and they are in a much weaker legal and financial position than married couples.
4.5 People with Down’s syndrome are at a higher risk of developing Alzheimer's disease, and tend to develop it at an earlier age than the general population. About 13% of people with Down’s syndrome develop dementia. There may be about 750 households in Scotland with a person with Down’s syndrome and their family carer, with 2,250 families being non-resident carers for a person in supported accommodation. Carers are often ageing parents, and face difficulty caring compounded by a lack of suitable resources for people with both Down’s syndrome and dementia.
4.6 There are estimated to be 1,605 people with dementia aged under 65 in Scotland. Carers for younger people with dementia are more likely than other carers to be working, and to have dependent children, and less likely to be engaged with the benefits system before the person they care for is diagnosed. The emotional impact of a diagnosis of dementia for the family of a younger person can be very severe and aggravated by a lack of suitable resources and the greater financial impact of dementia due to the loss of earnings and more onerous financial responsibilities; and the new payments for personal care do not apply to people under 65.
4.7 About 8,400 carers of people with dementia live in rural areas of Scotland, but this may be an underestimate. They face poverty, due to lower average earnings in rural areas, lack of availability of suitable housing, lack of availability and choice of information and resources, transport problems and costs due to distant services and variable levels of community support and acceptance, increasing the risk of isolation and the burden of caring.

5. Conclusion

5.1 This report aims to raise the awareness of commissioners, planners and assessors about the complex nature of dementia and the interaction with other psychosocial factors that influence the ability of carers to care. The nature of dementia profoundly affects relationships between the person with dementia and others closely involved with their lives, especially the person with the role of primary carer. Appropriate, timely high quality resources provided for the person with dementia will go some way to meeting the needs of carers, provided that the views and wishes of both the carer and, as far as possible, the person with dementia have been taken fully into account in the assessment process; but the separate needs of carers must be fully assessed and responded to.
5.2 The core resources identified in Planning Signposts for Dementia Care Services should be available across Scotland. These include resources to meet the needs of people with dementia and their carers for emotional support, information, therapeutic interventions and practical help throughout the illness. However carers also have their own independent needs for information, peer support, counselling, carer education and one to one support in developing coping strategies.
5.3 Care services need to reflect the diversity of differences amongst carers within every community. Service planners and providers need to identify these differences and recognise the need for resources to be responsive and flexible to meet the needs of individuals and their carers.
5.4 Service objectives and outcomes are best defined both in terms of delayed entry to long-term care and of improved quality of life for the person with dementia and their carer. The key principles which underpin resource delivery must be choice and availability at time of need. Goals for outcomes that aim to enhance quality of life, as defined by the carer and the person with dementia, will mean that services will be better targeted and more cost effective. Carers’ health and emotional well-being will be better protected, allowing them to care longer for the person with dementia with proper support, if that is what they choose to do.

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