Planning signposts for dementia care services

Executive summary

1. People with dementia are entitled to live their normal lives for as long as possible. A key objective of formal services should be to enable them to do so. This report focuses on core services which should be available to everyone with dementia, from the early stages of the illness and throughout its course, no matter where they live. It provides signposts for planners and service commissioners by modelling the range and volume of services estimated to meet the needs of people with dementia and their carers within a population of 100,000 (based on Scottish population statistics).
2. The current base level of provision is low and the numbers of people affected by the disease is increasing as our population ages. The most recent projections indicate that in Scotland there will be an estimated 58,000 people with dementia in 2001, rising to 66,000 by 2011. That is a rise of 3.6% between 2001 and 2006, and of 10% between 2006 and 2011.
3. Adequate and appropriate services are not in place for the majority of people with dementia and their carers in Scotland. They are severely disadvantaged by the lack of appropriate support and care. Priority for the health and social care needs of people with dementia should be reflected in NHS and local authority plans at every level: within joint mental health strategy and community care plans; NHS health improvement programmes, trust implementation plans and local implementation plans.
4. There will be approximately 1,100 people with dementia within a total population of 100,000. This report proposes levels of core services which should be provided for this group, based on approximately 60% of people with dementia living in the community and 40% living in institutions. These proportions are taken from studies of the current position. However, we know that more people would prefer to remain at home for with adequate support. A key question, which remains unresolved at this stage, is how far a shift is possible from hospital and care homes to the development of community-based services which enable people with dementia to remain at home for longer.
4.1 Diagnostic and assessment services

• Early and accurate diagnoses are increasingly important not only because of the availability of drugs to treat the symptoms of Alzheimer’s disease (and possibly Lewy Body disease) in the early to moderate stages but also because people with dementia are entitled to information about their diagnosis and treatment. An early diagnosis enables them to be involved in discussions about their present and future care.
• A specialist, multi-disciplinary diagnostic and assessment service is needed which should offer: pre- and post-diagnosis counselling; physical investigations into possible remediable causes of memory impairment; access to brain scanning facilities; pharmaceutical interventions, such as the new cholinesterase inhibitor drugs; information about the illness; and emotional support for the person diagnosed and the carer. Younger people may require a separate service involving neurology and access to genetic counselling.
• About 200 new cases will be diagnosed each year in the model population and will require specialist assessment and reassessment visits. We consider that the Royal College of Psychiatrists and Royal College of Physicians staffing guidelines for an old age psychiatry service are too low, especially for community psyhiatric nurses and need to be revised in the light of new developments.

4.2 Early stage responses
Research indicates that early intervention can reduce morbidity and depression for people with dementia, carer stress, the need for expensive crisis intervention and may delay or prevent institutionalisation. Medical and psychosocial interventions can prolong the period for which people with dementia and their families continue to enjoy their normal pattern of life.
4.2.1 Therapeutic responses

• Drug treatments – the new cholinesterase inhibitor treatments are estimated to benefit about 88 of the 442 of those with mild to moderate Alzheimer’s disease. Everyone assessed as suitable for the treatment should have the opportunity to receive it.
• Rehabilitation – there should be a rehabilitation programme that addresses the need for mental and social stimulation as well as emotional support and physical assistance. There should be a clear protocol explaining who will be responsible for arranging rehabilitation programmes and which of the many health services should be involved.

4.2.2 Support and education

• Information and emotional support – people with dementia and their carers have a wide range of information needs including information about the illness, how to cope, services available, financial and legal issues. We recommend the provision of a specialist information and advice service with the employment of a dedicated part-time information officer with administrative support which would complement the information role of health and social care staff. The service might anticipate at between 200-400 enquiries per year from carers, people with dementia and professionals. The service may be provided as part of a specialist dementia care service or as part of a broader based community care resource and information centre.
• Counselling – people with dementia and their carers suffer multiple losses including a sense of loss of control over their own lives. Counselling can help people come to terms with the illness and regain a sense of control. We recommend the provision of a specialist counsellor, supported where there is sufficient demand by sessional counsellors. The counsellor may be employed within a specialist dementia care service alongside the information service, or as part of a generic counselling service. Evidence suggests that the service may be used by between 80-100 clients a year.
• Carer education/training – the purpose of carer education is to help carers identify and develop the skills they need to care effectively for the person with dementia, and themselves. There is some evidence to suggest that timely information, counselling and training reduces carer stress and enables them to continue to provide care at home for a longer period than they would otherwise. There is a case for the specialist community dementia team/old age mental health team to take a lead in promoting and developing training and ensuring that opportunities are accessible as part of a comprehensive support system for carers. Between 30 and 35 carer education programmes each year should be planned to meet the needs of carers in the model population.
• Advocacy service – this is especially needed by people with dementia because they become increasingly vulnerable as they lose their capacity to act on their own behalf. People with dementia who may particularly benefit from an independent advocacy service are those who live in either care homes or alone in the community, and have no immediate carers to help them protect their rights or make major decisions at times of transition. We recommend one full time specialist advocacy worker supported by a team of sessional advocacy workers and volunteer advocates. The dementia advocacy team could be employed within a dementia advocacy project or be part of a generic service. The workload for a single advocacy project is likely to be 80-100 per year. This is less than 10% of people with dementia in the model population. Even where specialist advocacy is available there will always be a continuing role for carers and professionals to act as advocates.

4.3 Community care responses

• The objective of community care services is to enable the person with dementia to remain at home for as long as they wish and for as long as possible. The planning task is to estimate in broad terms the potential demand for different levels of care. We estimate that 90% of those with constant care needs and 20% of those with regular daily care needs are in some form of institutional care. Of the 678 living at home: 38 (6%) of people with dementia will require constant care and supervision, 429 (63%) will need help at regular intervals throughout the day and 123 (18%) will need support at some time during the week.
• Home support – 38 people will have severe dementia and require intensive packages of care including personal care (day/night), social stimulation, input from a specialist dementia community psychiatric nurse where there are behavioural difficulties, regular planned breaks where there is a carer. 429 people will require ‘standard’ packages providing routine personal care, practical help and day opportunities depending on the availability of a carer and the appropriateness of other services such as day care. Social and emotional support, including help with managing money, shopping and cleaning, will be required by 123 people.
• Day services/community opportunities/short-breaks/respite – these are provided primarily for the benefit of the person with dementia but may also provide the carer with a break. Day services may provide a range of opportunities for individuals including rehabilitative and social activities, and training for people with dementia of working age. Services may be provided in a range of settings including day hospitals, day centres, drop-in centres, home-from-home schemes and the person’s own home.
• The total demand for these services at 100%, 75% and at 50% take up per year is as follows:

Type of service	Volume (100%)	Volume (75%)	Volume (50%)
Short-stay respite	2,295 weeks	1,722 weeks	1,148 weeks
Day care	66,207 days	49,656 days	33,104 days
Evening care	17,440 evenings	13,080 evenings	8,270 evenings

4.4 Long-term care responses

• The need for long-term care for those with a co-resident carer may be hastened by a number of factors, the most usual being the presence of a co-existing medical condition, behaviour changes which the carer finds too stressful or difficult to manage or the illness or death of the carer. People with dementia who live alone are more likely to be assessed for long-term care at an earlier stage, before the illness becomes severe.
• Within our model population, on the basis of current provision, there is likely to be a demand for 439 places, with approximately 165 (37%) in residential care homes, 135 (31%) in nursing homes, 87 (20 %) in old age psychiatry wards and 52 (12%) in geriatric long-stay wards. The Mental Welfare Commission for Scotland recommend special units for people with dementia whose extreme behaviour disturbance has become too difficult to manage in any other setting. We recommend that a special unit making provision for ten places should be available. The current pattern of provision of long-stay care is set to change with the future integration of the residential and nursing home sectors and the potential shift in the balance of care from institutions to community-based services. If the volume of services for people with dementia can be increased substantially so admission to care homes can be delayed then it will be possible to reduce the number of care home places required.
• Long-stay care provision, wherever provided, is most suitable for people with dementia when it is provided in accommodation which meets the following principles:

1. provided in small, local, domestic-scale units close to where people have lived
2. care delivered to where the person lives and adjusted to meet their changing needs
3. provided in a ‘dementia friendly’ physical environment both inside and outside the building.
4. Extra-care housing – this provides 24-hour on-site support. We recommend the provision of a minimum of 18 places to meet the needs of our model population.

4.5 Palliative care responses
Research shows that the palliative care needs of people with dementia are poorly understood. Pain control, nutrition and fever management have been identified as causing specific problems. We recommend that palliative care specialists employed by the NHS should have specialist knowledge in relation to people with dementia who are dying, and provide training and advice to staff in other facilities including residential and nursing homes. Additional resources should also be allocated to meet those situations where the needs of the person with dementia who is dying cannot be met within existing resources.
5. Throughout the course of the illness, people with dementia will require both specialist dementia services and support from generic health and social care services. All staff in contact with people with dementia need to have specialist training in dementia care.
6. Alzheimer Scotland appreciates that planning community care services is affected by a number of complicated factors. We are concerned that:

• there has been no significant shift in resources from institutional to community-based services for people with dementia. As a consequence alternative services in the community have not been developed and choice for consumers is limited.
• progress continues to be hampered by the chronic lack of data on dementia and problems besetting information sharing between statutory agencies.
• These issues must not be allowed to justify further planning blight for the development of dementia care services.

7. Alzheimer Scotland strongly supports the recommendations of the Accounts Commission:

• The establishment of dedicated joint dementia care planning groups within every health and local authority area. It may be appropriate for dementia planning groups to be sub-groups of either mental health or care of older people planning groups, both of which would need to collaborate closely. Strategic planning groups concerned with planning services for carers will also need to have cross-representation on the dementia-planning group.
• Lead officers to be appointed from within health and local authorities with responsibility for strategic planning for services for people with dementia and their carers.

8. Local planning and service development must be informed by the views of people with dementia and their carers. The ability of people with dementia to express their views about the services they receive or wish to have has been underestimated in the past and this area of consultation and involvement is one which Alzheimer Scotland is keen to support.
9. Planning Signposts is the first phase in the development of a wider Scottish Dementia Action Programme. We hope it will stimulate a range of national and local initiatives that will improve the lives of people with dementia.

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