Response to Reshaping care for older people

Consultation body

Scottish Government

Response date

September 2010

Focus of consultation

Reshaping Care for Older People

Our response is based on our knowledge and experience of the needs of people with dementia and their carers. It is also informed by our consultation on the Reshaping care questionnaire with key stakeholders, including people with dementia, informal carers and those working in dementia care (approximately 150 respondents).

Dementia

Age is the main risk factor for dementia and is one of the key reasons why older people need care and support services. As our population ages, the number of people with dementia in Scotland is set to double over the next 25 years.

Dementia is the progressive loss of the powers of the brain, which gradually impairs every aspect of mental and physical functioning. It is a long term terminal illness with care and support needs increasing as the illness progresses.

People with dementia and their families already do much for themselves; the state would benefit greatly from harnessing the natural supports that exist in people’s lives during the early stages of the illness and supporting families to plan for future care needs.

1. Who should be responsible for providing care

The majority respondents to our consultation believed support should be provided through some combination of the state and the individual and/or their family. A significant minority of respondents believed that the state should be responsible for providing care; this commonly derived from the view that they had contributed to society all their working life, so deserved to receive something back in their old age.

Most care for people with dementia is already provided by informal carers, typically family members; it is in the best interests of the state to provide an appropriate level of support to enable these carers to continue in their caring role for as long as possible. Priority should be given to finding ways of spending money to support families in ways that provide value for money. All circumstances will differ and require a personalised approach. Whilst the majority of people with dementia will live with a family member who is their main carer, a minority will live alone and have no informal carers. They will therefore rely on social work and health services to support them to live within the community.

2. Type of care preferred

There was overwhelming support from respondents to our consultation for care to be provided at home for as long as possible; familiarity is important for people with dementia and was the natural choice for most. However, many acknowledged that circumstances change and no two individuals are the same; illness progression and the burden on informal carers are important factors to consider. There may be a need for the person with dementia to move in order to receive more intensive support.

Around two thirds of people with dementia will live in their own home, often with a family member as their main carer. People with dementia also form the majority of care home residents; around 40% of people with dementia are in some form of long term care institution. There is a lack of choice for people with dementia; many of our respondents felt supported housing should be an option.

Good practice examples: Croftspar Place, Glasgow

Eight specifically designed single storey self-contained flats provide housing support and care for older people with dementia in Springboig, Glasgow. Commissioned by Glasgow City Council Social Work Department and managed by Cube Housing Association; Alzheimer Scotland provides personalised housing support, personal care and social support through a dedicated team from an onsite staff base.

The overall aim of the development is to extend the range and choice of options available to older people with dementia who require support and care on a 24 hour basis. This means that people who require assistance at unusual times of the day and especially at night can be supported in a tenanted property.

This service enables individuals to live in tenancies in the community for as long as possible, so avoiding early admission to care homes.

The current system often results in care homes being an inevitability for many people with dementia, with the only choice being between different care homes. There is a lack of personalised care and inappropriate use of antipsychotic drug treatments in care homes. In addition there is a lack of meaningful activity and disconnection from mainstream community presence.

Alzheimer Scotland believe that a key objective of health and social care services must be to assist people with dementia to continue living their normal lives in the community for as long as possible; and that a move to long-term care should be a positive choice, not a last resort. There should be a range of options open to families as the person with dementia’s support needs increase through the unlocking of resources within the system to allow for individual budgets and self-directed support.

In addition there should a cultural and ethos shift within the practice of care homes to human rights and a personalised approach, supported by the leadership of community health and social care professionals. Care homes should be viewed as part of the community with access to local health and social care facilities and meaningful activity embedded into daily life.

4. Confidence in care system

The majority of respondents to our consultation either felt the system did not meet needs or only partly met them. Criticisms included informal carers not being adequately supported, insufficient understanding of dementia, late diagnosis and lack of post diagnostic support, lack of respite and ageism within the system. However, some respondents had good experiences and had trust in the current system. A number of respondents had not personally experienced the system, so felt unable to comment.

The experience of our respondents demonstrates that the current system does not meet the needs of the majority. Alzheimer Scotland’s 2008 study of community care services for people with dementia found insufficient provision, inflexibility of service models and lack of specialist support to meet the specific needs of people with dementia and their carers.

Pressure on resources and tightening eligibility thresholds mean that a crisis-led, rather than anticipatory, approach is taken. Access thresholds often result in late intervention, when the person’s condition has deteriorated and they have lost their natural supports.

There are some very good examples of support in the community; however, these are not available in a consistent way across the country. The current system of social care provides highly professional needs assessment, then people are often fitted to services the local authority already makes available. Rather than engaging with people’s own interests, these services often take people away from their community and create dependency.

6. Costs of care

The majority of respondents to our consultation believed that care should be provided by some combination of general taxation and personal contribution. However, a significant minority felt this should be from general taxation and free at the point of delivery. A small proportion supported the idea of a public insurance scheme; however, a few noted that National Insurance is already such a scheme and should be improved.

Within the climate of public sector budget cuts there is a need for existing resources to be unlocked so that public money can be combined with personal resources in order to create flexible support packages that reflect the individual’s needs and circumstances. Alzheimer Scotland believes people with dementia should have access to a fair and equitable individual budget that they, their families and social work or health professionals can use in order to best meet their individual needs and circumstances.

Changes to current system

All respondents to our consultation suggested some improvements to the current system:

• Early diagnosis of dementia, post diagnostic information and future support planning
• More specialist support that recognises and responds to the particular needs of people with dementia and their carers
• Flexibility, choice and control for individuals and families
• Better support for informal carers and increased availability of flexible respite care
• Greater use of technology
• Support to keep the person with dementia at home during the advanced stages of the illness
• Improvement in the quality of care in care homes.

There is a need to increase people’s choice and control over the support they receive. Personalisation can deliver better outcomes for the state and the individual; not only will it lead to better and more creative support, it will also deliver true value for money.

Alzheimer Scotland’s 2010 study demonstrated that, when empowered to direct their own support, families effectively combine state resources around their own natural supports to create support packages that reflect their own individual needs . However, the study also highlighted that this option is enjoyed by only a small number of people with dementia and their families in Scotland .

It is essential that the Scottish Government’s Self-directed Support Strategy, National Dementia Strategy and the outcome of Reshaping Care for Older People combine to provide a clear message on the direction of travel towards greater personalisation of health and social care so that the majority of people with dementia and their carers have genuine choice and control.

Henry Simmons
Chief Executive
September 2010

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