Fewer than half of those diagnosed with dementia are receiving the post-diagnostic support set out in Scottish Government standards, new statistics show.

In 2016-17, 47% of people estimated to have been diagnosed with dementia were directed to post-diagnosis support services.

Of more than 8,000 people referred, 84% received a full year’s support.

This means just 39% of those diagnosed received the support they were entitled to.

The Scottish Government’s standard is for all those newly diagnosed with dementia to receive at least one year’s post-diagnostic support.

The figures reveal large variations across the country.

The best performing board on the mainland was NHS Lanarkshire, which referred 61% of people to support services, while the figure for NHS Grampian was 19%.

Some boards, such as NHS Greater Glasgow & Clyde, have shown steady progress over the last three financial years – but others have stalled or slipped back.

Nationally, there has been a steady increase over the past two years, from 38% in 2014-15 to the current level.

The Scottish Government made a 2010 commitment to improve the support given to individuals after being diagnosed with dementia.

In April 2013 a new standard was introduced for all those diagnosed to receive a minimum of one year’s post-diagnostic support. Co-ordinated by a specialised link worker, this includes education, resources and strategies to help people and their families plan and adapt to living with dementia.

Jim Pearson, policy and research head at Alzheimer Scotland, commented:

“We know from experience that this crucial support can make a real difference for people with dementia, their families and carers.  It can also help avoid wasting vital resources through preventable and costly crisis care.

“There has been progress made since its implementation, but it is slowing down. Alzheimer Scotland is deeply disappointed that five years after this national guarantee was made, fewer than half of those entitled to it are offered post diagnostic support.”

The charity is calling for “sustained investment” to shift health and care services from being “crisis driven” and ensure people can access the services they need.

Age Scotland said the “inexcusable” figures showed a “wildly unacceptable postcode lottery” existed. Chief executive of the charity, Brian Sloan, said:
“Not only have 61% of people newly diagnosed with dementia gone without the promised care, but less than half of the total were actually referred in the first place. This is clearly not good enough and is a staggering disservice to those living with dementia, their carers and family…
“As the Scottish population ages at a significant rate, and those living with dementia predicted to increase by 50% over the next 20 years, they must do better and quickly. There are big questions to answer about why people haven’t been referred and why the 1,348 people who had, didn’t get the care they were promised.”

Scottish Government Minister for Mental Health, Clare Haughey, said her administration recognised there was more to do be done to extend access to care. She stated:

"Over the last decade dementia services have been modernised, supported by our world-leading work on post-diagnostic support, but we recognise that there is more to do to support local partnerships to extend access to this service. Life expectancy in Scotland is at a record high, and our growing and ageing population makes dementia more common.

“Many people are diagnosed into very old age with other chronic or terminal conditions and for some their dementia support – including in residential care – will be given in addition to existing care packages and not reflected in the post-diagnostic figures.

“We are currently testing the re-location of dementia post-diagnostic support in primary care and we have also recently commissioned new work to examine the delivery of the service for people with a high level of additional care and support needs.”