Hansard

As convener of the cross-party group on dementia, it gives me great pleasure to facilitate the debate. I thank each and every member who signed the motion and those who will speak tonight.

I highlight the work of the cross-party group, which is doing an admirable job in advancing the debate—some members of the group are in the public gallery. Since its formation, the cross-party group has expanded the number of its contributors, pooling from a wide range of stakeholders including organisations and individuals. Particularly welcome is the committed contribution from the growing number of people with dementia and their carers, such as those from the Scottish dementia working group.

I commend and underline the courage of the people who have participated in our discussions despite the difficult and deeply personal nature of the contributions. We set aside time for personal stories, to which I listen intently. The group has been, and continues to be, the most helpful resource in aiding the Scottish Government to understand the needs of sufferers and their carers and families, and I thank the officials from the Scottish Government who attend our meetings.

I also congratulate Alzheimer Scotland on its excellent report, “Delivering Fair Dementia Care For People With Advanced Dementia”, which provides an accurate analysis of the current situation in Scotland. It is right that people in the early stages of dementia are supported to live as well and as independently as possible, with a focus on social and family support and on community connections.

More and more people with dementia are living longer and are therefore reaching the advanced stages of the illness. Advanced dementia is characterised by increasing, complex and rapidly changing needs. As the Alzheimer Scotland report sets out, we need to understand that dementia is a set of symptoms that are caused by an underlying illness. The most common cause is Alzheimer’s disease, but vascular dementia is also quite common, and there are more than 100 other dementia-causing diseases.

As the Alzheimer Scotland report shows, Scotland has made great strides in improving dementia care in recent times—most notably, since improving dementia care was made a priority by this Government in 2007. The progress has been forged by hard work and effective contributions at every level—the contributions of practitioners and policy makers have been pivotal.

However, there are people with advanced dementia who are not receiving the care that they need, which means that their families and even their committed care staff are struggling to support them appropriately. That is because the current system does not recognise advanced dementia as a health condition. Dementia should not be considered as a side effect of ageing, but as the degenerative disease that it is. We must try to seriously address that issue. Happily, reports such as Alzheimer Scotland’s “Fair Dementia Care” are now bringing together all the evidence, which informs us that dementia is a degenerative disease.

How can we respond to that fact? People with advanced dementia need to have the medical nature of their condition recognised and to be provided with the health and nursing care that they need. The harsh reality that we face is that the current situation creates inequality for thousands of people who are living with the advanced stages of the illness. They might not receive the care that they need, despite the fact that they would get such care if they had a recognised health condition. That means that not only are their needs not being met, but they are being charged under the banner of social care for any care that they get. Compared with people who have other progressive terminal conditions, people with dementia face a disproportionate financial burden.

As they are currently structured, such social care charges are confusing to service users. There is a lack of transparency, information on the charges is often not readily accessible on council websites, and the charges vary wildly from local authority to local authority. The lack of consistency and transparency in the financial assessment process is a major concern. Most people who seek information do not understand how the process works, how the charges that they are asked to pay are calculated, or why, unlike with other progressive conditions, they are subject to charges for the care that they need. I hope that the Scottish Government’s forthcoming adult social care review will address those issues, and I am sure that it will.

Many people will be wondering about the cost implications of achieving this most necessary social progress, but it seems pivotal to remind members that this important issue cannot, and should not, be discussed only in terms of pounds and pence. Behind simple considerations of the costings are the more than 90,000 people who live with dementia in Scotland, who, along with their carers, also need consideration.

For example, we must think of Elaine. Elaine’s mum, Pat, has been in the advanced stages of dementia since 2015. Her mum had been going to a day care centre and a nursing home for respite breaks, but such inconsistent changes to Pat’s environment were causing more harm than good by disrupting her mood and making her care even more difficult for Elaine at home. In the end, Pat had to move into a residential home and was there for 10 months, at her own cost. In that 10-month period, she had to visit accident and emergency departments 11 times because her care home could not meet her health needs. On her last visit to hospital, she was admitted for three weeks due to a fractured skull, but she still had to cover the cost of her place at the care home during that time, despite the fact that NHS Scotland was meeting her health and residential needs. Elaine says:

“If my mum had access to the free healthcare on the same basis as those with other progressive illnesses, she would’ve had a better quality of life which would have saved the numerous crisis interventions which were not only costly in the stress placed on her and her family, but financially to her and to the health and social care system. The emotional impact of being a carer and watching someone you love deteriorate is hard enough without the added worries of how they are going to pay for care.”

After hearing Elaine’s story—one of many like it in our country—it is clear that, as a nation, we need to stand up to address this important issue now and to ensure that all stakeholders understand its importance and the need for rapid action.

The time is no longer ripe for examining possible solutions, as the solutions have already been highlighted by the Alzheimer Scotland report. Now is the time to act and we owe it to our fellow citizens to provide a fair system that gives them the same care and security as sufferers of other illnesses, thus helping to improve the quality of their daily lives. As the motion states, people with advanced dementia should receive the health care services that they need, free at the point of use, as would be the case with any other health condition. Our health and social care services should recognise that the needs of people with advanced dementia are health care needs and put in place services and structures that enable those needs to be met.

Dementia, and advanced dementia in particular, will be a major challenge for our country in the coming years. As I pointed out earlier, the debate concerns many women and men who, thanks to the recommendations of the Alzheimer Scotland report, would see their living conditions improve.

It should be remembered that the right to a dignified life is a fundamental right for the elderly, which is the demographic most affected by dementia and advanced dementia. Article 25 of the Charter of Fundamental Rights of the European Union states:

“The Union recognises and respects the rights of the elderly to lead a life of dignity and independence and to participate in social and cultural life.”

We must recognise the vital and imminent nature of the issue and do everything possible to meet the expectations of those who are directly or indirectly affected by it.