By Heather Edwards, AHP Consultant, Improvement Support Team (Portfolio: Dementia, Frailty and Palliative and End of Life Care)
 
When I joined the Care Inspectorate in January 2013 one of the first conversations I had with colleagues was about building on the work of Remember I’m Still Me, a thematic piece of research on dementia in care homes published in 2009 by the Mental Welfare Commission and the then Care Commission.
 
Last week, the Care Inspectorate published the report My life, my care home (The experiences of people living with dementia in care homes in Scotland). It presents the findings of our focused inspection work examining the extent to which the Standards of Care for Dementia are having an impact on the lives of people living with dementia in care homes. This report builds on some of the work of Remember I’m Still Me and sets the scene for a range of improvements in the coming years.

Person-centred care

Scotland has a unique policy landscape with a range of dementia standards, educational frameworks and three national dementia strategies. These strategies have mapped the experiences of the person living with dementia from diagnosis through end of life. At every stage of this policy development an important aspect was listening to the lived experience of people affected by dementia, those living with the condition and those supporting them. This policy context sits well within the new national Health and Social Care Standards and positions the person experiencing care and support at the heart of everything we do.

The big question is: have things changed since Remember I’m Still Me was published? Overall, I would say yes because in many ways we have seen tangible changes. For example, we found that many care homes are now collecting rich personal details about the person they are supporting, including life story books full of great family photos. However, we did not always find this information is being used to make a positive difference in the lives of those who are being supported.

We also found that the majority of care homes now have secure gardens. However, the next question is whether people can people access these gardens independently. We found that this was not always the case. In fact, over a third of care home gardens cannot be accessed independently and require staff to be available if a person wants to go out into the garden.

So, we can see that the key ingredients of quality care and support are often present. However, something appears to be lost in how these components come together. It was interesting to see that where staff understand and live the vision of the service then outcomes are better for those living in that care home. So, maybe this is how we move from task-driven care to a truly person-centred approach?

Within the Care Inspectorate, we have embedded the Promoting Excellence Framework for all health and social services staff working with people with dementia, their families and carers. However, this framework still needs to be fully understood and implemented in care homes. For example, staff development is not simply keeping a record of attendance at training. It should be a live and dynamic learning and development opportunity, which leads to improvements in the culture and delivery of care and support.

I was extremely encouraged to see that the majority of services no longer look to medication as the frontline response to stress and distress in a person living with dementia. This is a positive move and a key indicator that staff are looking more into the complexity of what it means to live with dementia. However, when we looked at whether care homes promote continence or manage incontinence we know work remains to be done to challenge expectations and what is considered ‘good enough’.

What next?

I believe that we need to continue to challenge the expectations of what it means to live with dementia. We need to think about rights and citizenship being maintained, regardless of the degree of cognitive impairment that a person may be experiencing. We need to continue to support the sector to test out improvements, which can make a difference not only to the lives of people living in a care home but also to the staff working there.

We need to take a holistic view, so that one domain of a person’s life is not seen as more important than any other. The fundamentals of care are absolutely essential but so are providing meaning and opportunities for growth. Potential and hope need to be the bases of our expectations for care and support.

At the Care Inspectorate we are committed to ensuring that quality of life for people is not limited due to lack of expectations of what it means to be an older person living with dementia in a care home.

If you would like to find more information and resources on improving care for people living with dementia visit The Hub website’s Spotlight on Dementia.

The report My life, my care home is available on the Care Inspectorate website and the report Remember, I’m still me is available on The Hub website.