Response to Scottish Government Self-directed support strategy - Introduction

Alzheimer Scotland was funded by the Scottish Government to carry out a consultation event in March with people with dementia and their carers on the draft national strategy for self-directed support in Scotland. This response is informed by the outcome of that day, and the quotes in italics are from the carers and people with dementia who attended.

The response is additionally informed by the Alzheimer Scotland pilot projects and the experience of the individuals they have supported to access self-directed support, and by Alzheimer Scotland's research report, Let's get personal – personalisation and dementia.

Our response is in three parts; an introduction, a set of key comments on the strategy document, and feedback from the consultation event.

Dementia

Dementia is a global term used to describe a range of brain diseases characterised by a progressive decline in intellectual and other mental functions. Whilst Alzheimer's disease and vascular disease represent the most common causes, there are a number of other less common forms of dementia.

There are currently 71,000 people with dementia in Scotland, around 2,300 of whom are under the age of 65. It is the second highest contributor to years lived with a disability for people over 60. As our population ages the number of people with dementia is set to double over the next 25 years.

Self-directed support and dementia

Currently very few people with dementia use self-directed support (SDS) throughout Scotland. It is estimated that only around 300 people with dementia in Scotland use a Direct Payment .

In 2009 the Scottish Government funded Alzheimer Scotland to host a pilot project which offers support and assistance to people with dementia and their families to find alternatives to entering a care home using self-directed support. In addition, our second Scottish Government-funded pilot on post diagnostic support has a key focus on enabling people to plan for and take control of their future support needs. Experience from these projects has been helpful in identifying the barriers people with dementia may encounter when trying to access self-directed support at different stages of dementia.

Five local authorities and two health boards are involved in the pilots and are working in partnership with Alzheimer Scotland to overcome the barriers and make self-directed support more accessible for people with dementia and their families.

Self-Directed Support Strategy consultation

The consultation event took place on 30 March 2010 at The Park Hotel in Kilmarnock. Despite severe weather conditions over 70 people attended; most were people with dementia and members of their families. The original target was 30-40 people either using or thinking about using self-directed support.

Publicity event was focused on the two geographical locations covered by the pilot projects (Ayrshire and Arran, East Renfrewshire and Renfrewshire), and neighbouring Inverclyde, West Dunbartonshire and Helensburgh areas and was distributed through Alzheimer Scotland and via social work, health, voluntary organisations and local media.

To enable as many people as possible to attend we offered re-imbursement of travel costs, help with travel arrangements, carer support and individual support for people with dementia.

The format of the consultation event consisted of an introductory presentation by Henry Simmons, Chief Executive, Alzheimer Scotland who set the scene for the day. Lindsay Kinnaird, Policy & Research Officer, Alzheimer Scotland presented on findings from research conducted with people with dementia using direct payments and John Smillie, a participant from Alzheimer Scotland's Ayrshire pilot project talked about how he uses the Direct Payment to provide care for his mother who has dementia and has remained living in her own home as an alternative to long term residential care

The presentations were followed by a very interactive and lively question and answer session. Two group discussion sessions in 6 groups, facilitated by direct payment managers from 4 different local authorities and Alzheimer Scotland staff and supported by scribes.

The first session was “What would make self-directed support work for people with dementia? and the 2nd session on “What does self-directed support mean at different stages of the illness?; for this session, participants chose to discuss either, early, mid or advanced stages of dementia.

At the end of the event a feedback session was hosted by Kate Fearnley, Director of Personalisation, Alzheimer Scotland.

The responses to a participant questionnaire and the evaluation form are in Appendix 2.

We would like to thank everyone who braved the severe weather conditions to come along and give their views.

The event made me feel as if my views are important…. the feeling of being part of a group of like minded people makes me feel quite emotional. I feel that since becoming involved with Alzheimer Scotland my mood has lifted, and I have a purpose again in life….due to events like Kilmarnock - Person with dementia