House of Lords Briefing

1 Introduction

Alzheimer Scotland is Scotland’s leading charity representing the interests of the 61,000 people with dementia, and their carers in Scotland. It also provides specialist dementia care services. We welcome the forthcoming debate on Alzheimer’s disease and other forms of dementia because of the high level of misunderstanding that exists amongst politicians, statutory health and social services, and the public, about the nature of the illness, its devastating impact on individuals and their families, and what can be done to help.

Although health, community care and justice are powers devolved to the Scottish Parliament, the needs of people with dementia and their carers are the same both north and south of the border and solutions can be shared to the benefit of all. This briefing highlights key areas where reforms in Scotland have been widely welcomed for their potential to improve the quality of the lives of people with dementia and their carers.

It is only recently that the Scottish and Westminster Parliaments have begun to recognise that the needs of people with dementia and their carers are significantly different from those of older people in general and other adults with acute mental health problems. This briefing sets out: why dementia requires a different response; problems experienced in the provision of health and social care, and some solutions.

2 Dementia is different

Dementia is an umbrella term for a number of neurological conditions, for which there is as yet no cure and treatment is limited. It is a major public health issue, being the fourth biggest killer disease after heart disease, strokes and cancer. Dementia is a devastating disease that progressively destroys the brain cells, causing impaired memory, communication and intellect. Most people with moderate to severe dementia will have major difficulty with self-care and will need continuous support and supervision. Unlike people with other medical conditions, the ability of people with dementia to make decisions about their lives diminishes as the illness progresses and leaves them reliant on others. It therefore has a profound affect on the psychological, physical and social well being of the individual and their family.

Dementia does not discriminate on the grounds of gender, culture or intellect. Whilst risk factors increase with age, younger people can also be affected. Over half of those diagnosed (55%) are aged over 80. In addition to dementia, a high proportion will have other health problems. 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.

3 Problems

People with dementia and their families potentially need the support of health and community care services from early identification of the disease until the person’s death. In practice, many people with dementia and their carers are only offered services when some crisis has occurred. The shortage of both health and social care for this group has resulted in unnecessary stress and the lack of appropriate care and support for the person with dementia and their carer. There is also considerable concern that services for people with dementia are underused by people from black and ethnic minority communities and that the problems they face have yet to be adequately addressed.

3.1 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, although declining, persists for the modern drug treatments in some parts of Scotland

· post diagnostic support services are scarce i.e. emotional support, counselling, information, legal and financial advice.

3.2 Inadequate services

· inadequate support for carers, especially flexible short breaks/respite care

· too few specialist day opportunities/day 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.

3.3 Poor quality care

· too few service managers and care staff with specialist dementia care training

· lack of awareness in acute 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.

3.4 Lack of Planning and Investment

· lack of recognition of the number and needs of people with dementia by health and local authorities. Their failure to plan and invest in the provision of essential, high quality services.

· lack of data on dementia is a serious barrier to strategic and local service planning.

3.5 Stigma in the community

· lack of understanding of dementia

· lack of awareness of help that can be given by friends and neighbours, shops and local services to help people live their lives as normally as possible.

4. Solutions

4.1 A dementia strategy

The problems identified cannot be dealt with in isolation and a Dementia Strategy or Action Plan 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 quality and quantity of support and care for people with dementia and their carers everywhere

· identify present and future need for dementia care

· co-ordinate activities of agencies for the implementation of policies

· ensure best value

· ensure equity of provision.

The following proposals would form important elements within the Strategy

4.2 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 Scotland, the Chief Medical Officer’s report, (2002) ‘Adding Life to Years‘ recommended that the 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 planning and development of local services is essential. This presents particular challenges in relation to people with dementia and calls for the deployment of special skills and creative approaches to consultation and involvement. Alzheimer Scotland has initiated an Involvement Policy which includes support for the development of local groups of people with dementia to have their say, and for the Scottish Dementia Working Group, a recently formed national group of people with dementia who wish to inform policy and services

· the development of dementia specific indicators within the NHS 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.

4.3 Quality

· the creation of National Clinical Standards for Dementia in the Health Service

· a dementia perspective to be included in the operation of National Care Standards

· dementia care training for the health and social care workforce responsible for delivering and managing services used by people with dementia and their carers

· recognition of different needs of people with dementia and their carers, including factors such as health status of carer, the social and physical environment, culture, gender, sexuality, age and geographical location.

4.4 Creating dementia-friendly communities

People with dementia and those who care for them are amongst the most socially excluded groups in society, especially co-resident carers. Positive community responses help people with dementia and their carers to live their lives as normally as possible and reduce the stress of isolation. Too often, local services, neighbours and friends are insensitive. Mental health anti-stigma campaigns should be extended to include dementia. In Scotland, we welcome the Scottish Executive’s initiative to fund a programme of awareness raising, carried out by Alzheimer Scotland. Alzheimer Scotland has initiated a campaign for creating ‘dementia-friendly communities’ which has been developed with local authority funding in Dumfries and Galloway. Similar initiatives are needed elsewhere to eliminate the myths about dementia and encourage people and groups in communities to be supportive and inclusive.

5. Lessons from Scotland

5.1 Legislative reforms

Scotland is ahead of the rest of the UK in terms of acting on the widely recognised injustices that afflict the lives of people with dementia and their carers. Briefly, these are the

·Adults with Incapacity (Scotland) Act, which recognises the rights of people with mental impairment or severe communications problems to be as fully involved as possible in making decisions that affect their lives. It enables carers to become proxy decision-makers to act on their behalf when they are no longer able to do so for themselves and it strengthens safeguards against abuse.

·Community Care and Health (Scotland) Act 2002, which introduced a number of important reforms regarding provisions for long-term care, including free personal care for people aged 65 and over, recognises carers as partners in the provision of care, with an entitlement to resources to help them maintain their caring role. This is an empowering concept, which views carers as providers of services (not as clients or service users), who, like any other service provider, require resources to support them.

However, full implementation is crucial to the success of this legislation and rigorous monitoring by the Scottish Executive and Scottish Parliament is essential. A model for such monitoring and research has been initiated by the Scottish Executive with the commissioning of Alzheimer Scotland with the Scottish Development Centre for Mental Health to examine the impact of the Adults with Incapacity (Scotland) Act 2000 and make recommendations for improvements. A report will be produced later this year.

Both reforms merit further attention in this briefing.

6. Long-term care

Alzheimer Scotland welcomed the recommendations of the Royal Commission on Long Term Care, and in particular the recommendation for the provision of state-funded personal care and nursing care, after a professional assessment of the need for it, to be made available in the person’s own home or in a care home.

We were delighted when the Scottish Executive accepted this recommendation, thus removing a major inequality from within our health service for people with dementia. Dementia is a chronic illness for which there is no preventative treatment or cure, the only ‘treatment’ is care. There is no fundamental difference between the state funding treatment for cancer and other chronic conditions than from funding dementia care. (See appendix 3 for definition of ‘personal care’. It must be remembered that individuals continue to meet their domestic help and accommodation costs).

6.1 Continuing care

About 42% of people with dementia are highly dependent on others to meet their daily living needs and require regular or constant care and supervision 24 hours a day, 365 days a year. The majority live in care homes but many thousands are cared for by a relative or friend in their own home. In Scotland, it has been estimated that 29,000 unpaid carers of people with dementia provide at least 56 hours of care every week, with little respite. A key objective of community care policy, enhanced by the introduction of free personal care, is to enable more people to have the choice of remaining at home longer with increased support from health and care services. On the whole families, especially spouses, want to stay together for as long as possible, and the person with dementia generally functions better in the familiar environment of their own home, cared for by people who know them well. However, research suggests that carers of people with dementia may be at higher risk of psychological ill health than other carers, unless they are provided with the support they need.

The Scottish Executive is to be applauded for the provision of additional finance to local authorities for the predicted increase in demand for services, particularly short-breaks and home support, and for the provision of better quality services. However, whether this increase is being spent as intended is open to question and robust monitoring by the government has proved necessary.

About one third of people with dementia living in the community live alone. Their needs will differ from those who live with a family. Research has suggested that people in this group are more likely to be admitted earlier to a care home and thus warrant attention from social and health services. There is a lack of extra-care housing provision which may be more suitable for a number of those living alone in an environment which is no longer suitable for their needs, but who are not so dependent as to need 24 hour care.

The needs of younger people with dementia also need to be separately addressed and we welcome a recent Scottish Executive initiative to identify areas for research that will establish how these needs can best be met.

6.2 Specialist dementia care in care homes and continuing NHS care

People with dementia have a high risk of entry to long-term care. Individuals most likely to require admission to a care home or hospital are those with challenging behaviour and those with complex health care needs. A constant issue of serious concern is the lack of trained staff, especially in care homes, who are capable of providing appropriate care to this complex group. The lack of suitable placements is frequently quoted as the cause of delayed discharges from NHS acute hospital wards.

7. Value of Adults with Incapacity (Scotland) Act 2000

The Act has been widely welcomed by organisations representing service users and carers across Scotland and is generally working well. It replaces archaic and fragmented legislation which restricted the rights of adults with incapacity and provided only very limited protection from abuse. People with dementia are the largest single group to benefit from the new legislation. The ‘old’ laws were harmful in that they defined incapacity in ‘all or nothing’ terms, while the new legislation states that just because someone has a particular diagnosis, for example, dementia or a learning disability, it does not automatically mean that they lack capacity. Capacity must be assessed in relation to specific decisions and any intervention must be made with strict adherence to the Act’s overarching principles. The Act provides various methods of intervening (that is taking decisions or actions) on behalf of the adult. Interventions can cover property, financial or welfare matters including health care (see appendix 4).

The new continuing and welfare powers of attorney are particularly appreciated by people with an early diagnosis of dementia who are able put their financial affairs in order whilst they are still able and to make arrangements for future decision-making about their care. Where the person with moderate to severe dementia has not appointed an attorney, the carer is able to apply to the sheriff court to be appointed welfare and or financial guardian to have powers to make financial, health and welfare decisions for the person as appropriate.

The Act provides for a system of appeal against an assessment of incapacity or against specific powers, which can be made by the adult or anyone with an interest in their welfare. The Office of the Public Guardian is able to investigate any concerns about financial management and the Mental Welfare Commission and local authority are able to investigate any concerns about the conduct of a welfare proxy.

The Act also deals with medical treatment and research. It gives doctors the authority to treat a patient who has been assessed as unable to give informed consent, except where there is a proxy with medical decision-making powers. With regard to research, the Act adopts the European Convention on Bio-ethics guidance, which the UK Government, regrettably, has not yet signed up to.

Alzheimer Scotland is satisfied that the Adults with Incapacity (Scotland) Act 2000 protects the rights of adults with incapacity and has built in sufficient checks and balances to safeguard their interests. We have grave concerns that those responsible for the development of the Mental Incapacity Bill have paid little attention to the Scottish legislation, which we believe to be perhaps the most progressive in the world.

8. Medical and Social Research

Over the past 20 years medical science has made considerable progress towards understanding the causes of Alzheimer’s disease and how it may be prevented or delayed. Recent progress has escalated with the introduction of cholinesterase inhibitors, which are effective for about a third of those assessed as likely to benefit. The cost of these drugs is about £1000 per year and there is evidence to suggest the following benefits: improved functional ability in terms of activities of daily living; reduced stress on carers; and delayed institutionalisation. It is likely that new developments will produce drugs that are more effective and will benefit increasing numbers of people. Such pharmaceutical interventions hold out great hope for future generations. Health economists suggest that drug treatments provide savings to the public purse in terms of a reduction in demand for health and community care services. Given the projected rise in our aging population over the next 30 years and associated increase in numbers with dementia, it is imperative that research continues into causes, prevention, treatment and cure.

The most recent figures for total Medical Research Council/NHS research spending (2000), reported by London School of Economics, showed that the total spend by the government and charities was £3.7 million on Alzheimer’s disease, compared with £33.1 million on cancer research, £5.5 million on research into stroke, and £15.5 million on heart disease. It is of considerable importance that the Government continues to fund medical research into this devastating disease.

It is equally important that the Government funds research into the effectiveness of non-pharmaceutical interventions, such as psychosocial therapies and the effectiveness of service interventions. A recent Scottish report (SIGN) on the effectiveness of a range of therapeutic interventions makes disappointing reading because of the lack of evaluative research into non- pharmaceutical interventions, which, anecdotally, appear to be benefiting many participants, but for which there is no systematic evidence to support investment.

9 Summary

9.1 Numbers affected

The number of people with dementia is steadily increasing as our population ages. There is an estimated 750,000 people with dementia in the UK to-day with the number rising to about 840,000 by 2011. In Scotland there are approximately 61,000 people with dementia, rising to 66,110 by 2011. The NHS Scotland Report (2002) Adding Life to Years, states that many of the problems currently encountered in service provision reflect a long-term failure to match that provision to the needs of an aging population. Alzheimer Scotland believes that careful planning for the future is needed now.

9.2 Recognition as a significant client group

Dementia is a serious and complex condition, which impacts on every aspect of the life of the individual and their family. The Audit Commission (England) and Audit Scotland have recognised that people with dementia represent a large group of community care users whose needs are significantly different from those of either older people in general or from people with acute mental health problems. Both national audit bodies have recommended that local authorities should have dedicated planning arrangements for this very large group with substantial community care needs, and that provision, demand and use of services for and by people with dementia should be monitored separately. The report Adding Life to Years recommended that NHS Boards and local authorities should assess population needs for dementia and plan appropriate capacity at all levels.

9.3 A comprehensive response

The support and care of people with dementia demands comprehensive and high quality health, social care, and housing services that are flexible and responsive to each individual and their carer throughout the illness. Sensitive and complex responses are required from health and community care service commissioners, professionals and service providers in the public, private and voluntary sectors. Alzheimer Scotland is in a unique position to have an overview of the current situation for those who have dementia and their carers in Scotland, and a vision of what a better future might bring. Only where there is a full range of services available in an area will it be possible to enable people to make choices to meet individual needs and maximise the quality of their lives.

Alzheimer Scotland
2 March 2004

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Appendix 1

Core services for people with dementia

The support for and care of people with dementia demands comprehensive and co-ordinated high quality health, social care and housing services that are flexible and responsive to each individual and their carer throughout the illness. Only where there is a full range of services available in an area will it be possible to enable people to make choices in meeting individual needs

· diagnostic and assessment services

· early intervention and support – therapeutic interventions e.g drug treatments, memory training etc

· support and education – information, emotional support, counselling, advocacy

· community care services – home support, day services, short breaks

· long-term care: extra-care housing, care homes, hospital

· palliative care – provided in hospital, hospice and own home settings.

Statistics

· dementia affects about 5% of people aged 65, rising to 20% of those aged over 80. Numbers will steadily rise as our population ages

· Scotland has about 60,660 people with dementia, about a third in the early stages of the illness and two-thirds with moderate to severe dementia. Over 2000 are under 65

· about 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.

Appendix 2

Some key research findings

The following quotations are taken from the NHS Health Scotland Needs Assessment Report: Dementia and Older People. October 2003.

Surveys of primary care teams have shown that dementia was associated with high levels of unmet need, mainly from mainstream support and help with supervising the elderly person… the availability of access on a 7-day, 24-hour basis and speedy access to practical support services, especially for crisis management, will assist prevention of admission to hospital/care home and facilitate rapid discharge and rehabilitation.
Philp I et al (1995) Community Care for demented and non-demented elderly people. British Medical Journal 310, 1530-1506

In relation to people with dementia and their families the concepts of care management and key working remain as important as ever. The role of key worker could usefully be further extended for people living at home through home care services and their staff. A Survey of local authorities in Scotland looking at care management for older people and those with dementia found wide variations in policy and practice and highlighted the limited development of intensive care management.
Stalker and Campbell (2002)

The effectiveness of services to meet needs will depend upon their availability, accessibility and intensity: this results in more stable and effective packages of care, adjusted to meet the changing needs of individual users and carers.

Joint provision and management of services for people with dementia has been rare while joint planning has developed in an irregular fashion…. Specialist services … have developed in a patchwork fashion varying considerably from one area to another.

Audit Scotland (2002) reported that local authorities only funded 10,000 community care users (of all ages and disabilities) for home support services of more than 10 hours per week.

Appendix 3

Definition of personal care

Scottish Executive’s definition of ‘intimate personal care’

Personal Hygiene: bathing, showering, hair washing, shaving, oral hygiene, skin care

Continence Management: toileting, catheter/stoma care, skin care, incontinence laundry, bed changing

Food and Diet: help with eating and special diets and with food preparation

Immobility: dealing with the consequences of not being able to move

Counselling and support: behaviour management, psychological support, reminding and safety devices

Personal Assistance: dressing, surgical appliances, prostheses, mechanical and manual aids, help with getting up and going to bed, transfers including the use of a hoist

Appendix 4

Adults with Incapacity (Scotland) Act 2000

The interventions introduced by the Act include:

· Continuation of the validity of ‘either or survivor’ joint bank accounts when one partner becomes incapacitated.

· Welfare powers of attorney and continuing powers of attorney (which must be registered with the new Office of the Public Guardian). The OPG and local authority can investigate suspicions of abuse.

· Intromission with funds – enables the opening of a dedicated bank account on registration with the OPG. This is useful where income and assets are low and little financial management is required. Only a private individual can apply this for.

· Welfare and financial intervention orders: on application to the sheriff court for ‘one-off’ decisions such as the sale of a house. This can be by a private individual on behalf of an adult or by the local authority.

· Welfare and financial guardianship orders: application to the sheriff for ongoing powers in relation to specific areas of decision-making. Welfare guardianship applications can be made by and granted to private individuals or local authorities. Local authorities and private individuals can make financial guardianship applications, but local authorities are barred from becoming financial guardians. This is especially useful for people with degenerating conditions, such as dementia, for whom many welfare and financial decisions will need to be taken by someone else.