23 April 2026
by Graham Martin
Carers having to “fight for every single thing” from pre-diagnosis to end-of-life
Dementia care in Scotland is failing to meet basic needs with families and carers feeling abandoned and forgotten, a new survey from Alzheimer Scotland has found.
It said that 75% of respondents believe care in Scotland is not fair and consistent for everyone, with many saying they had to “fight for every single thing” from pre-diagnosis to end-of-life.
A total of 845 people across the country responded to the poll, including current and former carers, people with dementia, health and social care professionals, and members of the public.
Of the 783 people with experience of the diagnostic process, 61% said that getting a diagnosis was difficult or very difficult.
Some reported waiting as long as five years for a diagnosis, meaning they often missed out on early interventions which could have slowed the disease’s progression.
An overwhelming 99% of people said faster and easier access to diagnosis was important or very important, with a similar number calling for more investment in early detection.
Help after diagnosis was also found desperately lacking, with 63% of respondents saying they did not know where to go for support or information, while 58% said it was not easy to find out what support or services are available in their local area.
Only 56% of people said they were offered a named link worker or support worker following diagnosis. This is despite the Scottish Government’s world-leading commitment that everyone diagnosed with dementia should receive a minimum of one year’s post diagnostic support.
One unpaid carer said: “My husband was diagnosed with vascular dementia six years ago. We have just been left to get on with it. Doctors do not appear to have annual checks for dementia.”
Others described post diagnostic support as “a postcode lottery” and in some areas “non-existent”.
Another carer called for better longer term support, saying: “Post diagnostic support is important, but there needs to be support as the condition develops and things get tougher and tougher for the person and their carer. That's when people often feel abandoned and get to crisis point.”
There was overwhelming support for Alzheimer Scotland’s call to introduce guaranteed dementia care pathways, with 96 per cent of respondents in favour.
One former carer said: “We floundered for three months thinking our lives were over because there was no dedicated pathway for us to follow. Other conditions have fantastic pathways in place. I was recently diagnosed with breast cancer and the difference was startling. My feet never touched the ground as I was guided through the treatment and services.”
Ahead of May’s Scottish elections, Alzheimer Scotland’s campaign for a guaranteed national standard of dementia care is key to its manifesto “call for change” to political leaders.
Henry Simmons, Alzheimer Scotland’s chief executive, pictured above, said: “The results of this survey paint a worrying picture of the state of dementia care in Scotland. From pre-diagnosis to the end-of-life, people with dementia, their families and carers are navigating a broken system that currently fails to meet even basic health and social care needs.
“Scotland is at a crossroads. We can continue down the current path or we can choose a new road that guarantees dignity, fairness and consistent care for everyone affected by dementia.
“We urge the next Scottish government to chart a new course by committing to make dementia the priority it must be by introducing our Dementia Care Pathway Guarantees.
“Evidence-based interventions must be given to everyone with a dementia diagnosis throughout the progression of their condition – every time, everywhere throughout Scotland.”
"Families abandoned" as dementia care in Scotland fails to meet basic needs - TFN
The above information is from a Third Force News (TFN) Weekly Health & Social Care roundup Newsletter Wed 23/04/2026