How is it for me? Perspectives on dementia care today
Dementia Awareness Week Conference – 18 June 2012Good morning. My name is James McKillop and I am a foundingmember of the Scottish Dementia Working Group.For those of you who don’t know us, and there may still be a few,the Scottish Dementia Working Group is the independent voice ofpeople with dementia within Alzheimer Scotland. We lobby forservice improvement for ourselves and those coming behind us.Every member of the Group has a diagnosis of some form ofdementia. Some of us have had a diagnosis now for over twelveyears.This is a special year for us as we are celebrating our 10th birthday.We are celebrating with a number of events, but the highlight willtake place next week when the Cabinet Secretary for Health,Nicola Sturgeon, is hosting a reception for us at the ScottishNational Gallery.With the Dementia Strategy almost two years underway, I havebeen asked to talk about perspectives on dementia care. Thegroup felt the best way to do this was to ask members about theimpact the Strategy has had on them and their thoughts for thefuture. We asked three questions and these were the responses.The first question was - how has the Dementia Strategy changedthings for you?Most of the responses were positive and included:
• That there is a greater awareness about dementia – and the more it is spoken about – the greater the understanding. • There is a more detailed awareness across the professionals – and a positive attitude about changing things (from a professional sense. • Also that there is more political interest • People are getting diagnosed quicker and treated better • The introduction of Dementia Champions was mentioned • That teams are becoming integrated • And one person said that the service they received from their optician changed and improved when they were told about the StrategyOn a less positive note, it was commented that: • It is a very big problem • There is still too much jargon • And the Strategy needs to be more clear cut • However, only one person said that they had not noticed any changesWe then asked if members could give any examples of goodsupport or a good service.I hope you can see all the good things people said. So, among theresponses were:
• In two local authorities people highlighted the outstanding help, quick response following diagnosis, and regular frequency of visits regarding support.• CPNs got a mention for their positive attitudes and help with access to benefits. One person said - I could ring them up for anything• The introduction of the Dementia Champions was again mentioned• That Alzheimer Scotland focuses on what you can do rather than not do• Integrated services between social work and health• There are good support networks• The opportunity to stay with the team throughout the dementia journey• Someone commented that they no longer feel on their own• Help with transitions• An increased awareness of ‘this is me’ so that you can express your wishes if you go into hospital• Care home staff getting SVQ qualifications• A good six-monthly review from their GP• Local Community Centre• Befrienders• Increased social activities• Good support• Courteous services• And finally someone said that the dementia cafes are good
Our third and final question was - what would you like to seehighlighted for the next Dementia Strategy and what things needto change? • High on the list was training and education of GPs. Although many of our members get a first class service from their GP, sadly this is not across the board • Training has currently got a high profile with the production of ‘Promoting Excellence’. However, this is a major task and members feel this must have a strong profile in the next Strategy. And the standard of training needs to be consistent across all services and people working with people with a diagnosis. Another comment was that there is not enough time for staff training • Also to ensure that consistent services are provided and consistent standards across services – not a postcode lottery • That there needs to a more structured approach to sharing good practice across professionals • That the momentum needs to be kept up for the changes being made Other comments included: • More time for professionals to spend with people with a diagnosis eg nurses GP’s. • More financial help and more money being put into dementia services • That some people still feel they are being spoken over
• Too much emphasis on the mini mental scale by nurses and GP’s which leads to anxiety• Good services are patchy• And finally, the importance of people with dementia to continue to be involved and have a voice – with a strong message – ‘we can do’Since we asked these questions, Henry Simmons has told usabout a new initiative from Alzheimer Scotland. As Henry saidearlier, in September Alzheimer Scotland will publish a reportaround support in the mid stage. This will look to address theemotional, physical and practical support needs and will bebased on eight pillars of support. The group is very much insupport of this and we are looking forward to working withAlzheimer Scotland on helping to develop these eight pillars ofsupport. Again, as Henry said earlier, it is hoped the report willinform the next phase of the Dementia Strategy.Members of the SDWG have been involved in the develop of theDementia Strategy from the beginning, and continue to beinvolved in the implementation groups, we are very aware of theenormous amount of work that is going on to achieve the aim toprovide world class services to people with dementia and theirfamilies across Scotland. That work is clearly beginning to bearfruit and although there is still much to do, I feel there is agreater air of optimism around now than there has ever been.Thank you.