Meeting of the Parliament 04 June 2019
I congratulate my colleague Richard Lyle on securing today’s debate and on his years of work as convener of the cross-party group on dementia, which has considered how we support people in Scotland who are impacted by advanced dementia. Both of my grandmothers died after suffering from dementia, and my mother has Alzheimer’s and has been in a care home for the past five years, so I have a personal interest.
I thank Age Scotland for its briefing and I thank Alzheimer Scotland for its excellent briefing and for establishing the fair dementia care commission, whose report forms the substance of Richard Lyle’s motion. The commission’s purpose was to establish how advanced dementia is defined and recognised in practice, to estimate how many people in Scotland are living with the condition, and to examine how advanced dementia care is financed. That is immensely important work, given that more than 90,000 people in Scotland are living with dementia, a condition that is often rooted in progressive illnesses, such as Alzheimer’s disease, which have no effective treatment and no cure.
The effects of dementia on the individual and their loved ones and carers are profound. Carers live daily with the physical, emotional and financial burden that the illness brings.
Advanced dementia is a frequently used term that is rarely consistently defined. To ensure that people with the condition get support, it is imperative that we recognise and respond to the healthcare needs that arise during the advanced stage. The fair dementia care commission proposes a concrete definition:
“Advanced dementia is associated with the later stages of illness when the complexity and severity of dementia-related changes in the brain lead to recognisable symptoms associated with dependency and an escalation of health care needs and risks.”
That is a robust definition, which should be incorporated into policy and practice. The commission goes on to say that healthcare needs and risks include
“neuropsychiatric symptoms, disorientation, communication problems, multiple functional impairments, immobility, incontinence and weight loss.”
Because advanced dementia has not been consistently defined, it is difficult to estimate how many people in Scotland live with the condition. It is possible that 35 per cent of people with dementia who are resident in care homes and about 7 per cent of older people who receive non-residential social care have advanced dementia.
The figures illustrate just how many people are affected by the inequalities in dementia care that the commission highlighted. The commission said in its report:
“People with advanced dementia do not have equal access”
to healthcare, compared with people who are in the advanced stages of other illnesses. That is largely because advanced dementia is met with a social care response, which means that people with the condition are disproportionately subject to social care charges, despite their needs being largely health and nursing care related, as Richard Lyle said.
The approach is costing people with advanced dementia an estimated £50.9 million a year in social care charges. The situation is compounded by the variation in charges across local authorities and a social care system that can be complex to navigate.
The commission makes key recommendations in its report, to enable society more adequately and fairly to meet the needs of sufferers and accord them dignity. It is significant that it asks the Scottish Government to recognise that people with advanced dementia have not just social but healthcare needs, which should be met with health and nursing care that is free at the point of delivery.
I understand that Scottish ministers are examining the report and are keen to meet the commission to discuss its recommendations. I trust that the Scottish Government will respond fully to the concerns and questions that are raised by the report, with a view to implementing the recommendations. As the chair of the fair dementia care commission, Henry McLeish, highlighted:
“Scotland is internationally recognised as having some of the most progressive dementia policy.”
Indeed, Scotland is home to ground-breaking research in developing treatments to slow down dementia and improve the quality of life of people who are living with it.
We cannot afford to stand still in tackling this great medical and social challenge. Thankfully, work is well under way right here in Scotland. Just yesterday, we heard the excellent news that Alzheimer’s Research UK has awarded £160,000 to the UK dementia research institute at the University of Edinburgh to fund its investigation into the treatment of nerve damage caused by Alzheimer’s. We must ensure that the progress made in understanding advanced dementia and its symptoms is reflected in our policies and practices. Once again, I thank Alzheimer Scotland and Richard Lyle for pressing the Scottish Government to do just that.
17:25