Dementia Manifesto 2003 - 2007
Dementia issues in the Scottish Parliament
The Scottish Parliament can make a difference – the Dementia Manifesto 2003 - 2007
Dementia is one of the most devastating conditions that can affect us. It progressively destroys the brain cells, affecting every aspect of daily life and can last for many years.
Dementia does not discriminate on the grounds of gender, culture or intellect. Whilst risk factors increase with age, younger people can also be affected.
People with dementia and their carers in Scotland are disadvantaged both in terms of the availability and quality of services.
The first Scottish Parliament introduced major reforms to social justice, health and community care that together have the potential to transform the lives of many thousands of people with dementia and their carers.
Alzheimer Scotland calls upon the new Scottish Parliament to
· Focus on the effective implementation of health and social care reforms
· Support the development of a Scottish Dementia Strategy
· Make legislative changes to improve access to justice
Problems
Lack of early diagnosis and support
· Many GPs are reluctant to diagnose dementia or refer on to a consultant. Late diagnosis means that people lose the chance to benefit from therapies to improve their lives.
· Post-code prescribing persists for the modern drug treatments.
· Post-diagnostic support services are scarce across Scotland i.e emotional support, counselling, information, legal and financial advice.
Inadequate services
· Too few specialist day opportunites/day care· Inadequate support for carers, especially flexible short breaks/respite care
· Inadequate and inflexible home support packages
· Lack of specialist care provision in care homes
· Lack of sensitivity to the diversity of differences amongst carers and people with dementia within every community.
· Poor co-ordination of services throughout the illness
Poor quality of care
· Too few service managers and care staff with specialist dementia care training
· Lack of awareness in general hospital wards of the special needs of patients with dementia.
· Lack of palliative care – either in hospital, hospice or own home.
· Lack of attention to basic health care needs of people with dementia, including nutrition across care settings
Lack of planning and investment
· Lack of recognition of the number and needs of people with dementia by health boards and local authorities. Their failure to plan and invest in the provision of essential, high quality services.
· Lack of data on dementia is a major barrier to strategic and local service planning
Stigma in the community
· Lack of understanding of dementia
· Lack of awareness of the help that can be given by friends, neighbours, shops or local services
Access
· Lack of free personal care for people with dementia aged under 65 years.· Difficulties in accessing the Adults with Incapacity (Scotland) Act 2000
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Solutions
1. A Scottish Dementia Strategy
Alzheimer Scotland believes that the problems identified cannot be dealt with in isolation and that a Scottish Dementia Strategy is necessary to address them effectively and comprehensively. A strategy is needed to:
· ensure that health and community care policies work together to improve the quantity and quality of support and care for people with dementia and their carers across Scotland;
· identify present and future need for dementia care;
· co-ordinate the activities of agencies for the implementation of policies;
· ensure best value;
· ensure equity of provision.
The following proposals will form important elements within the Strategy.
Planning and provision
· The establishment of multi-disciplinary dementia care planning teams at a strategic level to plan the development of core services as recommended in the Alzheimer Scotland report, Planning Signposts for Dementia Care Services (2000).
· A requirement to produce local data on dementia to inform planning, in the same way that it is required for people with learning disabilities and other disabilities. A good start would be the implementation of the following key recommendation in the Chief Medical Officer’s report Adding Life to Years (2002).
NHS and local authorities should assess population needs for dementia and other mental health services and plan appropriate capacity at all levels.
· The involvement of people with dementia and their carers in the planning and development of local services is essential.
· The development of dementia specific indicators within the NHSScotland Performance Assessment Framework would mean that progress would be monitored and reported.
· Early access to diagnosis and support, including new drug treatments. Post-code prescribing must be eliminated.
Quality
· The creation of National Clinical Standards for Dementia in the Health Service.
· A dementia perspective to be included in the operation of the National Care Standards.
· Dementia care training for the health and social care workforce responsible for managing and delivering services used by people with dementia and their carers.
· Recognition of the different needs of people with dementia and their carers, including factors such as: health status of carer, the social and physical environment, cultural, gender, sexuality, age, geographical location.
Creating Dementia-friendly communities
· Positive community responses help people with dementia and their carers to live their lives as normally as possible for as long as possible. Too often local services, neighbours and friends are insensitive. The mental health anti-stigma campaign funded by the Scottish Executive has been welcomed but excludes dementia. Investment should be extended to include the Alzheimer Scotland campaign for dementia-friendly communities.
2. Legislation
Improve the Adults with Incapacity (Scotland) Act 2000
· Introduce a tribunal system for hearings (as in the Mental Health Care & Treatment (Scotland) Act 2003) instead of the sheriff court which families find daunting.
· Make Legal Aid available for Advice and Assistance for those wishing to make an application under the Act, particularly for those applying for welfare guardianship.
It is important that the Scottish Parliament safeguards the integrity of the Act for the protection of the human rights of Scotland’s most vulnerable adults.
Introduce the Vulnerable Adults Bill
· To fill gaps in our legislative armoury for adults who are vulnerable due to frailty, disability or illness. It will benefit a small but important group of people with dementia.
Extend Free Personal Care to the under 65s : Community Care and Health (Scotland) Act 2002
· Younger people with dementia are not eligible for free personal care although their needs may be the same as those of older people. It would be fair to extend free personal care to younger people with dementia and others with assessed needs.
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Dementia: the facts
Definition
Dementia is an umbrella term for a number of progressive neurological conditions, for which there is, as yet no cure and treatment is limited. Knowledge of genetics and possible causes is increasing, but we are a long way from knowing why one person is affected and not another. The most common forms of dementia are Alzheimer’s disease, vascular dementia and Lewy body dementia. Less common forms include frontal lobe dementia and alcohol-related dementia.
Dementia is different
Dementia has a profound effect on the psychological, physical, social and financial wellbeing of the individual. Although there are common symptoms, the impact of the illness is different and unpredictable for each individual. Supporting someone with dementia involves understanding and meeting their complex and changing needs. This includes: emotional support; help with decision making; coping with risks, behaviour and personality changes; and eventually the provision of intimate personal care. In addition, a high proportion of older people with dementia will have other health problems.
Statistics
· Dementia affects about 5% of people aged 65, rising to 20% of those aged 80. Numbers will steadily rise as our population ages.
· About 10,000 -12,000 people are diagnosed each year
· Scotland has an estimated 60,660 people with dementia in Scotland;
about a third are in the early stages of the illness and two-thirds have moderate to severe dementia. Over 2000 are under 65.
· Over 36,000 (60%) of people with dementia live at home (a third live alone).
· 29,000 unpaid carers - family and friends - provide substantial care to someone with dementia at home.
Public concern
The results of a recent public opinion survey found that
· 33% were worried or very worried that they would develop dementia;
· 84% lacked confidence that services would be available if needed;
33% had misconceptions about dementia considering it: a normal part of ageing that nothing can be done to help, that it runs in families.
Ways in which MSPs can make a difference
· Champion people with dementia and their carers in your own constituencies.
· Speak out on dementia in relevant debates.
· Take initiatives to improve policies affecting the lives of people with dementia and their carers.
· Support legislation that improves the lives of people with dementia and their carers.
Freephone 0808 808 3000