Meeting of the Parliament 04 June 2019
I congratulate Richard Lyle on securing the debate.
The issue that we are debating is one that has long been of interest to me. My late grandmother had dementia up until her passing in 2011. As my mother cared for her for a large part of that time, I have seen at first hand the work that goes into supporting an individual who has dementia, or advanced dementia, which, as I think most people would have accepted, latterly my grandmother had.
Alzheimer Scotland’s report is timely and necessary. It rightly calls for a definition to be provided of advanced dementia. If we accept that dementia is a progressive—or, as some would say, a regressive—condition that advances throughout its course, there will come a point at which the individual’s healthcare needs will become more complicated and will require different interventions. That requires a definition to be in place in order to support the health and social care services that wrap around the individual to be able to identify the point at which care needs to be provided.
One of the difficulties and challenges that have been faced—I think that Alzheimer Scotland recognises this—is the lack of research that has been on advanced dementia. For example, a Cochrane review in 2016, which was set up
“To assess the effect of palliative care interventions in advanced dementia and to report on the range of outcome measures used”
could find only two studies to include in the review, both of which were from the United States of America. They covered 189 people. The report noted that six further studies were on-going at the time of the review, but stated that there was
“insufficient evidence to assess the effect of palliative care interventions in advanced dementia.”
Therefore, there is a need to collect appropriate evidence in order to ensure that there is data to inform decision making and care.
It is also worth noting that, unlike any of the other diseases that are among the top 10 causes of death in the United Kingdom, there is no recognised cure for dementia or a recognised official treatment that is provided to slow its progression. If dementia is detected early, that is not a sign that the individual can be cured or that the dementia can be removed. It will be there, and it will advance throughout the rest of the individual’s life.
Consistency and charging merit consideration. A tension always arises between the need to respect the ability of local authorities and local decision makers to make decisions according to their local priorities and the need for us to ensure that people in neighbouring local authority areas are not treated wildly differently. We have to face that tension. Although it is possible that we do not have to move to a uniform model, given the variations between rural and urban communities, perhaps parameters need to be set in order to ensure that people have an understanding of the charges that they are likely to face.
Consistency also applies in other ways. I remember raising the concerns of a constituent of mine—Jeanette Maitland—back in 2012. Her late husband had been seen by 106 different carers in the space of a year as part of his social care package. Such an approach will have an extraordinary impact on an individual with dementia, who will often require, and indeed thrive on, familiarity and an understanding with the person who provides their care That level of turnover of carers, with an inconsistency in the approach of carers, can only be harmful to the individual.
Charging is absolutely an important issue when we talk about consistency, but there are other areas of consistency that merit consideration as well.
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