Scottish Executive consultation - Developing the strategy for a Scotland with an ageing population
Alzheimer Scotland's response submitted 5 June 2006
Introduction
Alzheimer Scotland is the leading specialist dementia charity in Scotland and works to improve the lives of everyone affected by dementia. Our 2730 members include carers, relatives, people with dementia, professionals, groups and organisations. We run services in over sixty sites, and provide the freephone 24 hour Dementia Helpline, publications and an extensive website. We aim to be the national and local voice of and for people with dementia and their carers in Scotland and work to improve public policies for their benefit.
There are currently 64,000 people with dementia in Scotland. Most are over 65, with around 2000 under 65, most of whom are in their 50s and early 60s. The number of people with dementia is predicted to rise in line with the ageing population, to 109,000 by 2029, an increase of 70%.
Alzheimer Scotland welcomes the opportunity to comment on this consultation document. Our comments relate primarily to dementia, as this is our area of expertise. In general we are in favour of creating a Strategy for a Scotland with an Ageing Population.
This response represents the views of our membership, and is illustrated using specific input received from members who responded to the questions and one group of people with dementia. Quotes from these respondents are included throughout this document.
Responses to questions
1. Contribution and opportunity
People with dementia can contribute to society in many ways. In order to do this, they need support to remain active in the community and not to be discriminated against on grounds of age or dementia. The group of people with dementia who contributed to this response said: “we want to follow our interests and take part in local activities but may need support to do so.”
Carers of people with dementia, many of whom are themselves older people contribute to society by saving the state significant costs. Their care allows many people with dementia to remain in the community as opposed to a care home. Carers’ contribution should be recognised and better supported.
Carers of people with dementia need regular breaks from caring, financial support, training and information.
To combat the stigma of dementia, awareness-raising exercises for the general public are needed, as “it is an illness you cannot see”. Older people also face discrimination: “older people have a large amount of life experience, but are often accused of being old fashioned or behind the times” and can be “invisible to the young.” It was pointed out that “if retired, they (older people) have time to organise within their local community and to represent.”
Service providers also need to be educated about dementia, to ensure that they do not discriminate against older people with dementia and that they are able to help people with dementia to remain as independent and active in society as they can be.
There should be more opportunities for older people to undertake voluntary work.
“I would like to do more in my local (Alzheimer Scotland) service as a volunteer helper – sometimes there are restrictions about helping out.”
“Having help to become a volunteer in other activities would suit some people.”
2. Work
Some carers of people with dementia will work whilst caring. They will need reliable and effective support to care for the person at home and short breaks (also known as respite).
“People who give up work to be a carer should have more financial support.”
Some employers will need to be educated on the caring role so that they can offer flexibility for the carer if necessary, for example on working hours.
With the ageing population, more people will work until later in their lives. Older people with dementia should also have this right and will need support to do so, such as well-designed working environments and supportive employment policies.
“Older people should be allowed to work, but only if they want to”, however “people in their 50s and 60s might find it difficult to get paid work.”
There “should be the opportunity to work part-time” and this
should “provide time to let experienced older people give their knowledge to the public.”
One respondent felt that it was important to “still have a cut off age so people know it is OK to stop.”
3. Services for older people
High quality health and community care services will be increasingly important to improve the quality of life of people with dementia. More support is needed after hospital stays, involving intensive home support packages.
Appropriate and sufficient short break services, such as day care, home support and extended breaks where the person with dementia is cared for away from the carer will be increasingly important. These services should be flexible and of benefit to both the person with dementia and the carer. In addition, one carer felt that more support from care managers was necessary “instead of them only being in touch when a crisis occurs. Perhaps a monthly home visit.”
Services specifically for people with dementia are often more appropriate than generic services for older people because caring for people with dementia requires specialist skills, and because ‘they help to ensure the appropriate care, activities, staffing levels and management of people with dementia’ . There should be more of this type of service.
To make sure that services meet the needs of their users, people with dementia and their carers should be involved in their design.
4. Health and well-being
Alzheimer Scotland’s, Risk Reduction Campaign, launched in Dementia Awareness Week 2006, focuses on reducing the risk of dementia through healthier lifestyles. There should be high-profile national awareness campaigns to help people to adopt healthier lifestyles to reduce the risk of dementia in later life.
Nutrition was viewed as being particularly important by the group of people with dementia who informed this response. They said that if people are reliant on home deliveries or someone to cook for them, then good, healthy food is important, as in their experience such meals were viewed as having “little nutrition currently” and being of “very poor quality.”
People with dementia and their carers should have access to regular preventative physical and mental health checks.
GPs should provide home visits to carers who find it difficult to leave the person they care for.
More short breaks for carers will help them to stay physically and mentally well.
Support groups for carers and people with dementia can improve their mental health, as it often helps to talk to people in a similar situation. There should be more support to the voluntary sector to provide these.
Additional comments on health and well-being from respondents were:
- “stimulating and challenging activities” and “maintenance of skills”
- “more opportunities for organised exercise activities: need an adrenaline/ challenge “fix” at whatever age”
- “staying active – not lying down” and affordable health facilities in order to encourage this with good transport links were viewed as important
- “being part of a caring network – relatives, friends and community”.
5. Housing, transport and surroundings
Communities should be made dementia friendly. For example, people who serve the public should be trained in disability awareness (including dementia) and customer care policies (such as in shops) should take into account the special needs of people with dementia.
Access to local facilities is important to allow people with dementia to remain involved in their community. This includes using dementia friendly design by, for example having good signage and adequate parking facilities.
Transport should be physically accessible and there should be a reliable pre- and during journey information service. In addition, remote areas should be better served. The group of people with dementia who informed this response felt that they needed help from getting from a to b as public transport is not easy for them to use.
Putting appropriate assistive technology into the homes of people with dementia, such as sensors, safety devices and alarms, may allow them to remain in their homes for longer, as may dementia-friendly modifications and adaptations around the home.
More sheltered houses, supported accommodation and affordable retirement homes were stated by respondents as being necessary. In addition, it was pointed out that such new developments should have easy access and signage.
6. Other
Carers should have a statutory entitlement to short breaks
Direct payments should be actively offered to people with dementia and their carers who want to arrange their own care. They should be given adequate information and support to do this.
Resources should be put into raising the social standing of being an older person with dementia and to tackle the stigma against old age and dementia, like the ‘See Me’ campaign for mental health.
‘Younger’ people with dementia (most of whom are in their 50s and 60s) face particular difficulties because they are a minority and do not fit into many of the services designed for older people with dementia. In addition, the use of a ‘cut off’ age means that many of the concessions available to older people are not available to them.
“I think older people have more support than they believe. I know this as a carer for my husband who is 54 and was diagnosed with Alzheimer’s age 51. He does not have the privileges that many older people have. He has an older person’s illness but is too young to benefit from the many things available to pensioners:
That is just a few of the ‘privileges’ given to pensioners. My husband will not live to enjoy any of these.”
Conclusion
We hope this response to the strategy for a Scotland with an ageing population is helpful. We are happy to provide clarification on any of the points we have made.
Freephone 0808 808 3000