Alzheimer Scotland is committed to ensuring the voices of people with dementia, carers, partners and family members are heard by local decision makers. Over the past year, hundreds of people have taken part in our local engagement events across Scotland. They have told us, time and time again, about the challenges they face in accessing and using post-diagnostic support. These recently published figures from the Scottish Government echo the very real difficulties experienced by far too many people following a diagnosis of dementia. 

As of April 2013, every person receiving a new dementia diagnosis was guaranteed a minimum of twelve months’ post-diagnostic support from a named Link Worker, based on Alzheimer Scotland’s Five Pillars Model of Post-Diagnostic Support. 

This week the publication of Dementia Post-Diagnostic Support: NHS Board Performance 2015/16, unveiled key findings:

  • 7,198 people were referred for dementia post-diagnostic support in 2015/16. This equates to 42% of people estimated to be newly diagnosed with dementia within that year.
  • In 2015/16, nine of the fourteen NHS Boards had the same or a higher percentage of people newly diagnosed with dementia referred for post-diagnostic support compared to 2014/15.
  • Of those referred to dementia post-diagnostic support in 2015/16, 85% received one year’s support as proposed in the LDP Standard, the same as last year
  • Those aged 80-84 years accounted for the largest percentage of people referred to dementia post-diagnostic support services (27%).

Henry Simmons, Chief Executive of Alzheimer Scotland, said:

“All too often our members, people with dementia and those closest to them, tell us that they are having to wait months for post-diagnostic support. Many have not been offered this vital support at all. This Scottish Government report covers 2015/16 and we have no reason to be confident a meaningful improvement in figures for 2016/17. We want local decision makers – those who determine priorities and allocate resources – to hear and recognise the voices of people raising these urgent concerns in our communities. 

“We know from those people who have received the best quality post-diagnostic support that it not only transforms lives, but also helps to avoid the huge human and financial cost of crisis-driven care. Post-diagnostic support costs no more than £1,000 per person, per year. Its incredible impact means this must become a local investment priority for every Joint Integration Board and their Local Authority and Health Board members. We must ensure the provision of high quality Post-Diagnostic Support to deliver on this much-needed national commitment without further delay.”

If you want your voice to be heard by decision makers in your community, visit https://www.alzscot.org/campaigning/get_involved or call our 24 Freephone Dementia Helpline on 0808 808 3000.

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