Response to Commission on the future delivery of public services

Consultation body

Commission on public services - Scottish Government

Response date

January 20111

Focus of consultation

Future delivery of public services

Gradually over a period of years, the ability of people with dementia to manage day-to-day activities without help decreases; ultimately most functions of the brain will be affected and people with dementia will eventually need constant supervision and help with all aspects of personal care and activities of daily living. Informal carers also need support in order to maintain the caring relationship and their own health and well-being.

Current system of support for people with dementia

The vast majority of support for people with dementia is provided by informal carers, typically a family member. There is a largely unrealised opportunity for formal supports to work alongside the natural supports that already exist within the lives of people with dementia.

The trend in adult social care provision has been away from meeting relatively low-level need towards more intensive care needs. Whilst a welcome focus of Scotland's National Dementia Strategy, there is currently a widespread lack of post diagnostic and early stage support for people with dementia. This is denying people the opportunity to develop their understanding of the illness, enhance their coping skills and improve their chances of being cared for in their own homes for longer.

There are proportionately fewer resources in social care funding for older people compared to other groups ; there is also a propensity towards personal care, as opposed to social support, and an expectation that older people lead more restricted lives than younger adults.

The Scottish Government has an important strategic role in dementia care through setting the direction of policy and creating the conditions for new approaches to be adopted locally. The Social Work Inspection Agency demonstrated that the way older people are cared for differs widely between areas; the proportion of older people in care homes varies between local authorities as does the level and type of care provided to older people in their own homes .

Even with significant additional investment Scottish public services have been struggling to meet rising demand. Research in 2008 by Alzheimer Scotland found that whilst existing services have been shown to provide appropriate support for many people with dementia, there was a lack of flexibility and people with dementia were not qualifying for support until their condition had deteriorated . Further rationing through increasing eligibility thresholds will result in unbearable strain on informal carers and costly crisis interventions. It is therefore essential that there is a wider debate on the radical reform of existing services and the spending of current resources more effectively to improve outcomes for people with dementia and their carers.

The key principle of health and social care must be to assist people with dementia and their carers to live their normal lives in the community for as long as possible. Spending on health and social care for older people is focused on hospital and institutional care, with only 6.7% of the budget spent on care at home . There is a lack of alternatives to long term care for people with dementia; the current system often results in care homes seen as an inevitability, with the majority of care home residents having dementia.

Alzheimer Scotland’s view on opportunities for improvement and options for the future

There is a need for greater flexibility and better joint working between health and social care in order to support more families to determine how they wish to continue caring for the person with dementia throughout the different stages of the illness.

There are two key points at which resources can be used more effectively in the care and support of people with dementia: post-diagnostic support, and a personalised approach to services.
Post-diagnostic support

The Scottish Government’s Dementia Strategy has identified that a key gap exists in the support of people with dementia after diagnosis and before the person meets eligibility criteria for social care.

Good post-diagnostic support allows people to understand and self-manage their symptoms, access peer support, be assisted to remain connected to their family, friends and community, and to make legal, financial and support decisions for the future.

It is essential such support is provided immediately following diagnosis; without support and planning people with dementia can become disconnected from everything that held their life together, resulting in a premature need for formal paid support. Investment in this kind of preventative, anticipatory service is essential both for the quality of life for those involved and in order to meet the challenge of the demographic change.

Personalisation

The current system of support is unsustainable. It also often fails to make best use of the natural support of friends and family.

Research in 2010 by Alzheimer Scotland demonstrated that, when empowered to direct their own support, families effectively combine state resources around their own natural supports to create truly personalised support . However, this is an option not enjoyed by many families. Scottish Government statistics show that there were only 97 direct payments for a person with dementia in 2009/10; which represented 2.6% of the total number of recipients . The development of individualised budgets and self-directed support will provide greater value for money from existing resources through combining public resources, natural supports and wider community resources.

Have your say on current consultations and campaigns

You can help Alzheimer Scotland to influence public policy by giving us your opinions and experiences on current issues. We particularly welcome the views of people with dementia and their carers in informing our policy briefings and responses to consultations. The more people who feed in, the stronger our voice.