By Margaret Brown, Senior Lecturer and Depute Director, Alzheimer Scotland Centre for Policy and Practice, University of the West of Scotland

RECENT figures released by the National Records of Scotland (NRS) revealed the number of deaths from dementia and Alzheimer’s disease in Scotland has more than doubled since 2000. It should be no surprise that as we live longer the number of people dying with dementia will continue to rise, as this is mainly, but not entirely, a disease of older age. While these figures shine a spotlight on the number of deaths and measures that might be taken to prevent these, for me these statistics raise another important question: What steps should we take to sustain quality of life for people with dementia in the advanced stages of the illness?

While research and knowledge is increasing about the early experience of dementia, so is the awareness and recognition of the condition among experts. As people are diagnosed more efficiently and much sooner in the illness, then the number of deaths linked to the disease will continue to grow. However, simply measuring the number of deaths and focussing on whether these increase or fall then using this as a measure of success isn’t the correct approach to take. Rather, these statistics should play a role as part of a bigger picture approach.

In comparison, Scotland’s biggest killer, cancer, has had huge amounts of research and significant support for people in the advanced stages of the disease, and rightly so. Yet in contrast, despite the rising numbers, the amount of support and resources for persons with advanced dementia and their family and carers is significantly lacking.

People can be in an advanced stage of dementia for years – it’s not something that simply manifests in the last few months of life. Dementia is an unforgiving illness that becomes increasingly debilitating over time. The person with advanced dementia may struggle to complete everyday tasks we take for granted: eating, drinking, and moving around. They become less able to voice pain or discomfort, which makes it difficult to treat distress and illness. Family and carers are often in a position of providing care without the knowledge and skill to feel confident and while most learn as the journey progresses, sometimes this can be at great personal cost, emotionally, physically and financially.

My recent research study on quality of life for the person at the advanced stage of dementia also raised questions about how much is known about these changing and complex needs for the right kind of care and support, even among professionals.

Teaching nursing students and practitioners about this period in the person’s life is one way University of the West of Scotland has tried to make a difference but more needs to be done to position this in all professional health and social care education.

We need better opportunities for learning about this advanced stage of dementia for students, families and health and social care practitioners. This development of knowledge and skills will not only improve care and support for the person with advanced dementia, whether they live in their own home or in care settings, but also for the family and other caregivers.

It is crucial we pay more interest to the management of the later stages of dementia and we must move into a position where we are capable of fully supporting people living with the condition. We need a standard of care that ensures a good quality of life, and death, that can minimise, to the greatest extent possible, the amount of distress experienced in the last few years, months and days of their lives. Providing a good life and death is the key to everyone’s future.