Living with dementia in Scotland: the reality of discrimination and diminishment.

Monday sees the start of the annual Dementia Awareness Week (DAW) and I have to confess that it is a week which brings to mind mixed emotions for me. Professionally it provides an annual opportunity to focus on the issues which are important to those who live with dementia, their families, carers, and advocates. It is an opportunity to in coordinated and collective ways to emphasise the major issues facing those living in Scotland with dementia. Indeed, this year’s theme is entitled ‘Let’s Prevent, Care, Cure dementia together’ and over the week there will be a series of events, including the Alzheimer Scotland Tea & Blether campaign which will run in many places across the country.

On a personal level it is a week which brings into sharp attention my own memories of those close to me, like my late mother, who lived her last few years with dementia, and all the struggles and emotion caused by that reality.

But it is in drawing from those memories that I and thousands of others around the country simply know deep inside ourselves that the way in which we offer dementia care and support in Scotland is simply inexcusable and unacceptable. And to be honest it is well past time for the blatant discriminatory treatment of dementia and those who live with it to be called out as a stain upon the fabric of our collective Scottish political, and policy landscape. To live in Scotland today with dementia is to be marginalised, diminished, and ignored.

Now I hear the counter accusation to that statement that I am engaging in emotional hyperbole but I’m sorry I really believe that it is an assertion that is truthful.

The truth of dementia in today’s Scotland is one of financial and resource discrimination. It is over 3 years since I sat in a room with others and heard the former First Minster Henry McLeish launch a robust and rigorous academic and practice report calling for urgent change in the support of those with advanced dementia. And yet just last week Mr McLeish was writing and talking about the failure to move more than a snails pace in progress towards meeting the urgent asks of three years ago. Countless hundreds have died of dementia in that time.

He stated that:

“On the best analysis we have around 10,000 Scots – they have family, friends and community affected by this – and they have an advanced stage of dementia. They are both living and dying.

“They have got to a point where all their important needs are health needs. But what is happening is that they are being looked at as having social care needs…If they were regarded as having health care needs, they would be treated as free at the point of need.

“People with advanced dementia living in care homes are paying an estimated £49m a year, plus people with advanced dementia receiving care at home are paying an estimated £1.9m – coming to £50.9m”,” he said.

“I would describe this situation in 2022, this issue of advanced dementia as a moral outrage which exposes a massive inequity at the heart of care policy in Scotland.”

He is absolutely right as are other advocates involved in the Alzheimer Scotland campaign.

The truth of dementia in today’s Scotland is of a diminishing focus and appetite for the radical and significant change that is required. This is plain and simply an issue of human rights. It is a blatant breach of both moral and legislative frameworks to treat one group of people in a population who have urgent health needs in a manner which is systemically and consistently less favourable or equal than another. There would be a huge popular outcry if we decided that a child who develops cancer should not be treated free at the point of care by the State but we are doing precisely that by refusing to recognise that someone in advanced neurological decline has primarily health needs and only secondarily social care requirements.

The treatment of people living with dementia because they are primarily older is riven with blatant age discrimination and a lack of political nerve, commitment and intention. Three years – even in a time of pandemic – is long enough to have heard solipsistic political statements – the time for action is now. And all the promises of a National Care Service, of healthcare frameworks, of new older person health strategies add up to not a jot but are rather straws in the wind in a system resistant to the radical redrawing of discriminatory practice.

Further as I have reflected here before – is the discriminatory treatment of dementia in Scotland not also illustrative of a gender bias? The relationship between gender and dementia is a complex one not least that between the menopause and dementia as Davina McCall has recently stated. But maybe I’m being naive when I wonder if the lack of political and societal prioritising of dementia given the majority living with the condition are women has not something also to do with inherent gender bias.

I had the real privilege for nearly five years of chairing a group under Scottish Government auspices which brought issues of dementia and care homes together. Despite all the pressures it brought together people with lived experience, self advocates, professionals and policy makers, clinicians and carers – all focussed on improving the quality of care and support. I recently stood down from that role and upon reflection it is a regret that we had not made the real advances we had hoped for. In reflective moments I wonder why. It was not because of the lack of desire or vision, passion or energy. Something else in the system was and is resistant to real significant change.

After one of those meetings I was speaking with someone who cared for and supported his wife in her latter stages of dementia. It is a living loss too many know of every day. To see in front of you someone you love slowly lose a grip on meaning and memory, on function and action brings a unique ache and pain. He spoke to me of how he could determine how his wife was by simply looking into her eyes. Eyes that had once sparkled with fun and vitality as together they fell in love, brought up their children and lived out their loving. Eyes that had been filled with mischief and mystery, complexity and compassion. Those same eyes were now frightened and fearful, confused and anxious. He spoke about her watching into the distance and at a space beyond his reaching or reassurance and how when she came back from her wandering inside her head she always returned without a story but somehow diminished in her self. For him the hardest thing was looking into those eyes.

It is well past time for us as a whole society, not least our political leadership to look into the eyes of those who live with dementia and their carers, and tell a truth and a determination of ending discriminatory treatment, of restoring dignity and renewing human rights. Empty and vapid rhetoric should be put aside – we have all had enough of the snail pace of change when lives are diminishing all around us.

How many more dementia awareness weeks do we need to have before awareness and promise gives way to change and equality?

Donald Macaskill