Scotland’s ambitious dementia strategy ‘must translate into lived experience’

Persuading people to donate money to a hospice is not difficult, but care homes, even though many more people will die in one, are seen “very differently”, Heather Edwards of the Care Inspectorate told fellow delegates at Holyrood’s ‘Implementing The Dementia Strategy 2017-2020’ event.

This week’s event saw the Scottish Government’s third national dementia strategy, which attempts to create a human rights-based approach to post-diagnostic dementia care, described as “world-leading”.

In order to find out how dementia sufferers felt about care home conditions the Care Inspectorate brought patients along with them on inspections.

They were encouraged to ask themselves: ‘is this where I want to live? Does this meet my needs?’

Edwards added: “Sometimes when you ask people working in a care home and people who don’t live in a care home ‘would you like to live there?’ they say no, and that’s a terrible indictment.”

Yet while dementia patients are encouraged to be proactive in their lifestyles outside the care home, Agnes Houston, who suffers from the disease said: “the more you promote yourself and go to the gym and various things I do, the farther away any assistance and help is for you.”

Houston resorts to not discussing activities she does with doctors or risk not being listened to, because she “appears well in public”, she said.

The debate about what quality dementia care means offers many ideas, but no clear way to get there.

Delegates at the event described their desire to see care homes become further integrated into communities, more activities for dementia patients and further freedoms so patients are able to enjoy their lives to the fullest.

Ninety-seven per cent of care homes currently report that they offer some sort of learning and development opportunity, but that can be as simple as a one activity.

Delegates agreed they want those activities expanded.

Scottish Government policy officer David Berry agreed that more work needs to be done.

“The Scottish Government acknowledge[s] there is a long way to go” in caring for dementia patients, he said, adding that as part of the third strategy there will be a focus “to support primary care test sites in three parts of Edinburgh” which are “far more dementia friendly” with the goal of helping people to seek dementia support earlier.

A recent success from the ambitious dementia strategy is the creation of personal plans for dementia patients' complex conditions.

Yet, even though plans are developed, “the tricky bit is now using those personal plans,” Edwards suggested. Care homes have detailed information on specific needs, yet they are rarely translated into making a positive difference in someone’s life.

“We’re on the move, we’ve got the information; now it’s about using that information and weaving that into someone’s care plan and actually using it in an everyday basis,” she added.

Inevitably, with a stretched public purse, a lack of resources adds to the problem, delegates heard. “If you are living with dementia in a care home, what is good enough?” asked Edwards.

What some care homes have done well is use patients’ life histories to learn who their patients are, taking that information and integrating it into the daily routine.

One example of this was provided by Edwards, who has seen male patients who enjoy working with their hands survey the care home, clipboard in hand, and report to the home manager if anything needs to be replaced. The goal is to provide meaning and fulfillment to patient lives.

Professor Debbie Tolson, director of the Alzheimer Scotland centre for Policy and Practice said it was “really important to not underestimate the complexity of care” that dementia patients may need.

Sandra Shields, who is a dementia nurse for Alzheimer Scotland, said that while there is “a fantastic strategy that we should all be proud of”, it doesn’t convert into lived experience for some sufferers.

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“I think we have to keep on this journey, but we can’t dismiss how far along the journey we’ve come,” she added. 

In terms of policy progress, Jim Pearson, director of policy and research for Alzheimer Scotland, said “where we are with post-diagnosis is a significant step forward from where we were during the first dementia strategy”. The goal to make sure everyone receives post-diagnosis support is yet to be met.

The new dementia strategy is the third one created since dementia was made a national priority a decade ago. The strategy boasts 21 commitments with a focus on post diagnostic support, such as ensuring timely diagnosis and quality of life. Whether it makes us start to see care homes in a different light remains to be seen.