Debate on Charter of Rights for People with Dementia and their Carers

Clare had the opportunity to speak in the debate on the Charter of Rights for People with Dementia and their Carers. People with dementia are individuals first and foremost, and their care should take into account their unique personal circumstances, needs and wishes, as well as the needs of their family and carers.


I refer members to my entry in the register of interests, in particular to the fact I am a registered mental health nurse still in clinical practice, and I thank James Kelly for bringing the motion forward for debate in Parliament. I doubt whether there is a family in Scotland that has not experienced the loss of a loved one through dementia, and I mean loss in all meanings of the word. As many of us know, dementia takes our loved ones away from us little by little, day by day. It is estimated that currently, 855,000 people in the United Kingdom are living with dementia. That figure is expected to rise to 1 million by 2021.

Dementia is not a disease in itself; it is a word used to describe a group of symptoms that occur when brain cells stop working properly. That happens inside specific areas of the brain that affect how we think, remember and communicate. Over time it affects a person’s ability to make judgments and to act in their own interests, and the condition severely compromises their ability to protect their rights.

That is why the rights-based approach taken by the charter of rights, together with subsequent policy work placing an individual’s rights at the core of a person-centred approach, are so important. We should remember that people with dementia are individuals first and foremost, and their care should take into account their unique personal circumstances, needs and wishes, as well as the needs of their family and carers.

The charter has taken the United Nations-endorsed PANEL approach, which focuses on the rights of everyone to P for participate in decisions that affect their human rights; on A for the accountability of those responsible for the respect, protection and fulfilment of those human rights; on N for non-discrimination and equality; on E for empowerment—for people to know their rights and how to claim them; and on L for legality in all decisions, through an explicit link with human rights legal standards in all processes and outcome measures.

It is good to hear from respected charities such as Age Scotland that progress has been made in recent years in promoting a rights-based approach but I am sure that, across the chamber, we can all agree that there is still work to be done.

Many years ago, when I was a young staff nurse, I saw at first hand the effects of dementia on people while working in hospitals and nursing homes, both here and overseas. Most of the people I nursed would be considered elderly—they were in their 80s and 90s—but dementia is a condition that affects not just older adults but those in their 60s, 50s and even 40s. It is projected that, by 2031, the number of 50-year-olds will have increased by 28 per cent, so juggling a career and a diagnosis of dementia will become a real issue for many people, families and employers.

We are seeing more relatively young people with the condition, and we need to be prepared to accommodate their particular needs. With a number of people still working when they receive their diagnosis, reasonable adjustments need to be made by workplaces to support a person with dementia to allow them to continue to work for as long as they want to do so.

As James Kelly did in his speech, I welcome Age Scotland’s work with the STUCto highlight the difficulties that many people experience with their employers following diagnosis. Dementia fits the criteria of a disability under the Equality Act 2010. As a consequence, employers are legally obliged to make reasonable adjustments to support someone with dementia to work, should they wish to do so. Employers need to be more aware of the charter of rights for people with dementia.

Dementia friends is an Alzheimer Scotland initiative aimed not only at raising awareness about dementia but at reducing stigma around the illness. My staff and I have registered with the initiative, and I encourage other MSPs and employers to do so as a first step in being more understanding about dementia and how we can make our communities more dementia friendly.

When we value and embed the experience of those with dementia and their carers, as has been done through the Scottish dementia working group and the national dementia carers action network, we can ensure that the voices of people with dementia are heard and that their rights and concerns are heeded.

I welcome today’s launch of the third dementia strategy, which will respond to the increasing proportion of older people with dementia, continue to deliver person-centred treatment and support those with a dementia diagnosis. It is that focus on improving standards by listening to those with dementia, putting them at the centre of their care and working in collaboration with their carers and third-sector organisations that will help us to improve their quality of life.

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