Hansard

I congratulate Richard Lyle on bringing this important debate to the chamber, and I welcome Alzheimer Scotland’s report, which has given us bold and worthwhile recommendations on which to act.

For loved ones and their families, a diagnosis of dementia, as with many other illnesses, can open the door to a host of worries and burdens. It spells the beginning of the difficult journey of a progressively worsening disease, and it takes individuals and their families where they do not want to go. I know from my time as chairman of Argyll and Bute integration joint board how difficult it is for them, so I congratulate Alzheimer Scotland on its centres and its use of art, music and singing, which are all most helpful in the lives of those people.

I have previously, in the chamber, touched on some of the consequences of the challenges that dementia brings. Financial scammers often capitalise on the vulnerability of people who are living with dementia. As I have said, initiatives that are sponsored by groups such as the Life Changes Trust raise awareness of simple solutions—telephone call blockers, for example—that can make the world of difference to people who are living with dementia.

The focus of today’s debate is how we respond to dementia when it reaches an advanced stage. It is at that point that sufferers are in critical need of reliable and helpful practices that will guide them along the right path of care. Every response should be founded on an accurate definition of symptoms, as the Alzheimer Scotland report suggests. Memory loss is, perhaps, its most significant symptom, but over time the condition sadly extends into greater and more serious health setbacks, including Pick’s disease. My brother-in-law, who was an armed services veteran, had it, and he received the most fantastic care at the Erskine care home during his latter days.

With advanced dementia comes a range of complex health issues and health needs layered one upon another. The demon of dementia is of a continuously changing and deteriorating nature, and the needs of a sufferer and their families change as they learn to grapple with the disease and its increasing challenges. That has not been translated into Government policy and practices, and the report seeks to change that.

It is right that dementia sufferers be encouraged to live as independently as possible, with help from their families and carers, but advanced dementia must be recognised as being more challenging and as deserving of clear policies and care that is free at the point of use.

The experience of living with advanced dementia does not look the same for every person, but it should be universally accepted that at the last stage of the illness the need goes far beyond social care—as has been highlighted already by previous speakers. A health problem must be met with the right solution—healthcare. In the past it was assumed that the health risks and worsening forgetfulness were down to the ageing process. Thankfully, with much greater awareness, we have come a long way from that mindset.

We have seen an increase in funding for Scottish researchers to find possible new ways of treating the condition, but we still see a gaping hole in Scotland’s policies when it comes to the advanced stage of the illness.

At the heart of the problem is the marked difference between dementia and other terminal and progressive illnesses, in terms of how they are viewed and the care that patients receive. While other illnesses, such as cancer, are quite rightly met with high standards of free healthcare and end-of-life treatment, for dementia those come at a considerable cost, and varying guidelines are in place. That is despite the facts that there is not a single treatment that can either cure or slow the deterioration of dementia, and that many other major illnesses are associated with it.

The estimated scope of the costs of social care for families with a dementia sufferer points to that inequality: every year, people with advanced dementia who live in care homes have to pay £49 million for the social care that they receive in response to their illnesses. The large sum speaks for itself and lays bare the burden and complexity of decision making that those people face. The approach to advanced dementia care needs to be redirected towards a transparent and specific model of care that is free from financial worry.

Life can be challenging enough for people who live with dementia. They neither need nor deserve the added complexities and burdens of the cost of social care. Their quality of life should not be hampered by confusing and varying procedures that do not recognise their health problem for what it is. They require expert healthcare services that are provided on a free and equal basis.