A survey of people with dementia, their families and carers has found that the care on offer in Scotland is neither fair nor consistent, with many saying they are having to “fight for every single thing” from getting a diagnosis to end-of-life support. Alzheimer Scotland says the next Scottish government must end what it says has become a postcode lottery, by introducing consistent, high quality dementia care pathways.

A total of 845 people across Scotland took part in the survey including current and former carers, people with dementia, health and social care professionals, and members of the public.

Three in four of respondents said they believe dementia care in Scotland is not fair and consistent for everyone.

There was almost universal support for faster and easier access to diagnosis, and for more investment in early detection.

Of the 783 people who had experience of the diagnostic process, 61% said that getting a diagnosis had been difficult or very difficult, with some saying they had waited five years by which time they had often missed out on early interventions that could have slowed the disease’s progression.

Nearly two thirds (63%) of respondents said they did not know where to go for support or information, while 58% reported difficulties finding out what support or services are available in their local area.

The last Scottish government promised that everyone diagnosed with dementia should receive a minimum of one year’s post diagnostic support. However, only 56% of people said they were offered a named link worker or support worker following diagnosis.

Carers’ perspectives

The Alzheimer Scotland research also captured the experience of a number of carers.

One told the researchers:

“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.”

Alzheimer Scotland is campaigning for the introduction of dementia care pathways, available uniformly across Scotland, as part of their A better future for dementia care in Scotland manifesto.

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.”

A policy crossroads

Chief Executive of Alzheimer Scotland, Henry Simmons says the survey findings paint a worrying picture 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.”

 

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