INTEGRATED POST-DIAGNOSTIC SUPPORT FOR PEOPLE WITH DEMENTIA IN SCOTLAND
By Anna Buchanan, CEO, Life Changes Trust
In 2013 the Scottish Government made this commitment:
“…by 2015/16, all people newly diagnosed with dementia will have a minimum of one year’s worth of post-diagnostic support coordinated by a Link Worker, including the building of a person-centred support plan”.
There are around 90,000 people living with dementia in Scotland. In 2016/17, approximately 17,500 people received a new diagnosis but, of these, fewer than 50% were referred for formal post-diagnostic support and just 39% received that support.
It would be far from accurate, however, to imagine that these stark figures paint a complete picture of the support provided to people in Scotland after a diagnosis of dementia – support that should help them live as full a life as possible for as long as possible. There is a wide range of work taking place from the Shetland Islands to Dumfries and Galloway that is not captured by these figures. There is increasing evidence that community-led work is complementing policy-led offers of support or, in some cases, filling the gap where the formal offer has not been made or accepted.
This short article argues that policy-led support and community-led support should be recognised as complementary. It also suggests we should be defining post-diagnostic support in terms that are broader than the Scottish Government’s commitment to at least one-year's support post-diagnosis. Further, a truly integrated approach to support of people with dementia should measure and invest in the combined contribution of health, social care, other agencies such as housing, and the charitable/community-led sector (the abundance of the community) in order to properly assess and secure high quality support in each Integration Joint Board locality.
(This article does not cover support for unpaid carers because that is an article in and of itself.)
Policy-led post-diagnostic support
The Scottish Government’s commitment to one year’s post diagnostic support is an excellent starting point. Its aspiration is commendable and many countries around the world look to Scotland as an exemplar nation in respect of dementia. Good policy implementation requires a fairly accurate assessment of the extent of the need a policy aims to address; it also requires an accurate assessment of the amount of funding that will be needed to meet the aspiration. From the citizen’s perspective it is important to know whether the policy gives them a right that could be enforced.
Some talk about post-diagnostic support as a human right, or a statutory right. Sadly, however, it is neither of these and people with dementia and unpaid carers have no recourse to the courts if the support is not provided. Many people with dementia and unpaid carers are struggling to come to terms with what they can expect from the commitment to post-diagnostic support. Experience across the country is varied and we know work is being undertaken to improve the delivery and experience of policy-led post-diagnostic support.
We seem to be in the territory of the oft-lamented postcode lottery and so it is important that we gain a real understanding about why this is the case. Lack of resources (without doubt a key element)? Lack of partnership working? Lack of understanding about how the national government commitment should be implemented at a local level? All of these?
An increase in the number of Link Workers would be extremely helpful. They have heavy caseloads and work with people who have a wide variety of types of dementia and who are all at different stages in their dementia. Link Workers need to be skilled and knowledgeable multi-taskers. A number of them juggle more than one job.
An article in the Evening Express (7/2/2019) reported that just 18.6% of people newly diagnosed with dementia were referred for support across the NHS Grampian area in 2016-17. Of 1,798 people, 335 people were referred for one year’s formal support. When asked about these statistics, a spokesperson for NHS Grampian explained that not everyone chooses to take the package of support. Many people who provide support to people with dementia in Grampian, however, think it highly unlikely that 81.4% of people would have turned the offer down.
We must develop a better understanding of the reasons why people may turn down this formal offer of support and, as importantly, why it may not have been offered in the first place. Government guidance on post-diagnostic support stipulates that the offer must be made at least one more time in the twelve months following the first offer. The Local Delivery Plan (LDP) Standard that provides the figures quoted above does not provide a code for recording why the offer was refused on a first or subsequent occasion; there is a just a code to record that it was refused. Perhaps that information is held elsewhere.
Community-led post-diagnostic support
The Life Changes Trust has invested around £800,000 in Grampian over the past four years and through this investment has reached, to date, upwards of 1,200 people with dementia and 800 unpaid carers with various types of support. Some attend health walks, art classes, and fitness groups; others have found peer support amongst other people living with dementia in their local area. All of these groups offer more than an activity or social opportunity; they provide a gateway to a wider offering of information and support either from that organisation or from another. Many people have been given support that helps them stay in their home for longer or has increased their personal income. Others have been given confidence to plan for the future or have met someone who has walked the same path.
There are many other organisations, not funded by LCT, providing similar support for people with dementia and unpaid carers across Grampian. But none of this is counted as post-diagnostic support or recognised as part of a bigger story about dementia in Grampian. Yet this work fills the gaps when policy-led post-diagnostic support is not provided, for whatever reason, and continues long-term support beyond the first year. It provides an easier pathway to support for some because people access it through an interest or a known community venue.
The Life Changes Trust recently hosted a three-day event in Grampian which was planned collaboratively with local partners. The days were dynamic, informative and inspirational – a far cry from the dismal numbers published in the Evening Express. (A video of the conference is available on the Trust’s Facebook page.) There are many good things happening in Grampian for people with dementia, and there are challenges. We are looking forward to seeing how the learning from this three-day event helps further shape dementia strategies and plans in Moray, Aberdeenshire and Aberdeen.
A truly integrated approach to dementia
Dementia is not just about the individual; it is about the community and its response to dementia. A full community response to a recent diagnosis cannot be contained within a very welcome Government commitment to one year’s post diagnostic support and its implementation. People with dementia need to know they are entitled to this support so they can take up the offer, but localities should also take a broader approach that can fill the gaps if the policy-led offer of support is not taken up and, where it is taken up, to smooth the transition from the first year of support into the years that are to come. It is less about solving the conundrum of ‘policy into practice’ and more about recognising and investing in the collective abundance of the community. Link Workers play a significant and valued role in that community and are a lifeline for many.
Over the coming year, the Life Changes Trust will host a number of collaborative roundtable discussions to explore more deeply what a community-led, policy-supported, integrated approach to dementia could look like in localities. These will complement our regional ‘Community and Dementia: Creating Better Lives’ events, which are ongoing (see www.lifechangestrust.org.uk or @lifechangestrst for details). Keep an eye out for dates and we will publish the outcome of these discussions and related evidence.
By Anna Buchanan, CEO, Life Changes Trust
DEMENTIA, CONSUMERS IN SCOTLAND, CHILDREN & YOUNG PEOPLE'S MENTAL HEALTH AND WOMEN IN BUSINESS IN SCOTLAND
Research undertaken by WES at the end of last year for the Federation of Small Businesses found that women owned businesses already contribute a staggering £8.8bn into the Scottish economy every year. That’s more than some of the stated economic “growth sectors” according to the Scottish Government Growth Sector statistics.
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