New dementia strategy for Scotland: Everyone's Story

The Challenge

Dementia affects an estimated 90,000 people in Scotland.

Dementia is not an inevitable part of ageing. It is an umbrella term that can be caused by a number of diseases which, over time, damage the brain, typically leading to deterioration in both brain and bodily health. Dementia is life-shortening and, though there are limited pharmacological interventions, there is no cure.

Whilst memory loss is often a symptom of dementia, changes in mood and behaviour sometimes happen even before memory problems occur. Symptoms worsen over time. Eventually, people with dementia will need others to help with daily activities.

Dementia has physical, psychological, social and economic impacts, not only for people living with dementia, but also for their care partners, families and society at large. There is often a lack of awareness and understanding of dementia, resulting in stigmatisation and barriers to diagnosis and care.

Dementia affects an estimated 90,000 people in Scotland, an estimated 3,000 of whom are under 65^[3]. However, every person with dementia is unique. Dementia affects people in many different ways, depending on the type of dementia they have as well as personal factors such as their social situation.

Irrespective of the type of dementia, the impact on a person’s life extends beyond their brain health to affect their whole life. Maintaining employment; financial security; independence and autonomy about how and where to live as the illness progresses and relationships with family, friends and community are all affected to varying degrees.

In 2012 the World Health Organisation declared dementia a global public health priority^[4], so Scotland’s new dementia strategy is everyone’s story.

We are committed to upholding rights, civic participation, social inclusion, support and care for people living with dementia in Scotland now and in future. We need to consider how the support we provide, the places we design, the homes we build and the communities we create allow us all to live happy, meaningful and connected lives, regardless of age or stage of dementia.

We want this 10-year strategy to go further than before.

In Scotland, there is a proud history of dementia support. In 2010, we were one of the first countries to publish a dementia strategy and input from people with lived experience is long-established. We acknowledge the positive contribution of partners and we want this 10-year strategy to go further than before. Our engagement highlighted the wide, expanding and active dementia community here and the variation in the support people access. Some approaches are longstanding, whilst others have developed more recently. For people to live as well as possible with a dementia diagnosis, we need to harness and coordinate all of this. Indeed, enabling a more inclusive conversation on dementia that reflects everyone’s story is something that this strategy has sought to embed from the outset.

Good progress has been made but there is more to do. By working together, we can make better connections, find new opportunities and increase the impact of our work to ensure anyone in Scotland can live as well as possible with dementia.

A note on language about unpaid care: Throughout this strategy we have used the term ‘care partner’ concurrently with unpaid carer to describe people who have an unpaid caring role (unpaid carer/care partner). Members of our National Dementia Lived Experience Panel expressed a preference for the term care partner over the term ‘unpaid carer’. Those living with a diagnosis of dementia identified with the term care partner as one that values them as equal citizens, progressing through dementia with a spouse, partner, family member or friend who supports them without pay. Panel members who have a caring role agreed the term as being reflective of a more equal relationship with the person they support, something they value and want to maintain, despite the significant challenges dementia can present. Recognising this as a partnership is important in upholding and maintaining choice and dignity for those with a diagnosis and those who support and care.

However, we know that the term [unpaid] ‘carer’ has a specific role in legislation and policy, that it covers all different types of caring circumstances and that it can be very difficult for people to recognise themselves as carers (or be recognised). We also know that there is much more work needed to ensure that people providing care to someone, unpaid, are truly recognised as partners in care. But we want to respond to the views of those with lived experience and build on this discussion, and therefore would like to use this strategy to kickstart a longer national conversation on what is the right term for unpaid caring moving beyond 2023 – to uphold the rights and equality for all and respond to the lack of recognition and inequality that caring can cause.