September for some time now has been World Alzheimer’s Month and, on this Tuesday, 21^st it will be World Alzheimer’s Day. This year, across the world individuals and organisations will be asked to reflect on the theme ‘Know dementia, know Alzheimer’s.’

It is an opportunity to consider the power and nature of knowledge. As part of this organisations and individuals are being encouraged to find out more, to get to ‘know’ more about the signs and symptoms of dementia so people can get the right diagnosis and support as quickly as possible.

Knowledge and dementia are an interesting association. Knowledge is both personal and emotional, intellectual and factual. It is also something which can inspire, create passion, and foster change.

As I sat down to write this blog, I could not help but think as I have for some years now at this time about my own mother who died from dementia some years ago. Before she was diagnosed, I thought I knew about dementia. In some senses I did, and I suspect I thought I probably knew more than others. As a young student on placement, I met many older patients in what was then termed a ‘psycho-geriatric’ ward including a man who had undertaken a career of neurological research but had himself developed dementia. So, I knew a lot about the technical aspects of the disease as I worked in different places and occupied different roles. But in reality my knowledge was a partial shadow of the truth.

Then my mum was diagnosed, and the lessons of love offered a different, hard, and painful knowledge. It was the knowledge of tear and fear shared by my family as we witnessed mum and granny decline inexorably in front of us. Having worked until her early 80s her decline seemed so rapid and yet so inexorably slow. This was a woman whose solution to all of life’s traumas and ills was the making of a cup of tea, a ‘strupak’. Then came that moment when she had forgotten the steps of her healing ritual and stood frightened in an empty moment without remembrance. She had forgotten how to make a cup of tea. The stripping of inner knowledge is one of the obscenities of this disease. Knowing changed, love remained, but relationships pained and fractured. There was a new world of knowledge, one which was not about the past or action, but one which was about discovering with faltering step and searching fingertips the landscape of a new world.

Knowledge and dementia are indeed strange sisters.

But there is another dimension to knowledge. There is not just the knowledge of fact and intellect, and even that of emotion and heart. There is also a knowledge that changes you and puts you on a new and different path, a knowledge where you cannot no longer be the person you were before it’s awareness, can no longer accept old familiar ways.

Knowing what I do about this disease both in my head and heart I cannot accept the casual discussions and debates, the easy political presumptions, media stereotyping and societal ageism that I have heard and witnessed for so long and which have been so manifest in the last few weeks.

The future of social care is centre stage in both Scotland and the other nations of these islands. The lazy debate which has been held has wholly failed to appreciate the nature of social care and the reality that it is more than a series of services and supports but a whole eco-system that enables people to fully live their lives as citizens regardless of condition, age or infirmity.

But perhaps where that public and political debate has fallen most short has been in its exploration of dementia.

The knowledge that needs to be shouted from every street this World Alzheimer’s Day is that dementia is a health condition first and foremost. So why? why? why? are we allowing its treatment to be seen solely through the prism of a social care solution? Paradoxically maybe those of us who have over the years resisted the pathologising of dementia and what happened when I was young which meant people were to be hospitalised, perhaps our emphasis on the need to see dementia as more than just a neurological disease, perhaps we bear some culpability. But the pendulum has swung far too far to the extent that dementia is in the eyes of many seen as a disease which can ‘solely’ be supported by social care interventions and supports. This is naive ignorance. It is a denial of the clinical reality that dementia is a disease first and foremost and one that requires significant clinical and health service intervention alongside social care support and re-enablement.

Where this simplistic dualism is seen most acutely is in how society resources and finances dementia care – or to be more accurate does not finance it.

It is wholly iniquitous that if diagnosed with dementia one has to sell one’s home to receive residential nursing home support. Now credit where it is due, the Scottish Government have committed to extending free personal and nursing care to better reflect the true cost of care and have recognised the gap between the true cost and the reality of underfunded rates in our care homes – though we await the realisation of the commitment. But that does not go far enough. How is it in any sense fair that someone who is in the advanced stages of dementia is not given the option of 24/7 nursing and social care in their own home? Why if someone chooses to or needs to live in congregated living like a care home is it assumed that their accommodation costs would be the same as at home? Come on this is the crude arithmetic of discrimination.

Henry Simmons the CEO of Alzheimer Scotland in a newspaper article this past week rightly argued the policy on enhancing free personal and nursing care still left people with advanced dementia facing huge costs because of the high level of health interventions and care that they need.  I was fully supportive of Alzheimer Scotland ‘Fair Dementia Care’ campaign when it was launched and remain so. As Simmons said to The Herald.

“In Scotland, we’re looking at five years to see the development of the new National Care Service, and three years for the rest of the UK before the full amount of new funding will find its way to social care.

“Notwithstanding the fact that people with dementia do not have time to wait for these improvements, there is also one fundamental and massive inequality that neither of these proposals go far enough to resolving – or even mentioning – and that is the fact that people with advanced dementia… are still going to have to pay substantial amounts for their care costs.

“Take a person living with advanced dementia. Their illness – a direct result of an untreatable brain disease – has progressed to the point where they may require assistance to walk, bathe, toilet and communicate.

“For this person, these are unequivocally health care needs.

“Why do we still feel that it is acceptable that we ask this person to pay for their care?

“We are talking about people who have worked their whole life, contributed through tax and National Insurance to help build the quality of life than many of us seek to enjoy.

“Why is dementia so different to other terminal conditions? It’s unequal, it’s unfair, and it needs to stop.”

 

People who have lived with dementia and those they love have known for years about the grotesque inequality of the funding of care and support, of clinical intervention and health support for the condition. It is a knowledge that should shame those who make political decisions and exercise fiscal oversight.

Knowledge must always lead to action, or it withers the heart. Knowledge of the inequity of support and care for those living with dementia should challenge us all to create a system which treats all with equality regardless of condition, age or illness. I yearn for the maturity and the dignity of such a day to come. I suspect – sorry mum – that such a day will not be brought about by cups of tea alone but my calling out the inequality at the heart of dementia care for what it truly is – an abuse of the human rights and dignity of tens of thousands of our fellow Scots.

Donald Macaskill

I’ve mentioned before in this blog that the openings of books and stories always seem to remain with me. Whether it’s a simple ‘Once upon a time’, or ‘The clock struck thirteen’, ‘It was the best of times and worst of times’ or the more recent ‘Mr. and Mrs. Dursley of number four, Privet Drive, were proud to say that they were perfectly normal, thank you very much.’ – the opening of a book can stay with you long after you have put the book down- but of course that very much depends on how good the book is in the first place.

What I struggle with is in all honesty remembering any final lines. There is of course, ‘They all lived happily ever after’ but despite attempts to talk up the endings most are forgotten – unless the ending is a poor one – that we do remember.

This past week I was pleased to attend the launch of ‘Every Story’s Ending’ which is in my view probably the singular most important work on palliative and end of life care to come out of Scotland in many years. The report comes from the Scottish Partnership for Palliative Care and is the output of hundreds of conversations, insights and reflections on the essence of palliative care and why it is so important for a society. It has about it the spirit of those conversations in its narrative, honesty and depth. It is a fairly long report but please read it because it will return the effort twelve-fold. The report has loads of practical recommendations which are rooted in sense and experience.

We put so much energy into planning birth and entry into life but so little in thinking or planning around our death and departure. But the way we end our story is as critically important as what comes before not only for ourselves but for those we leave behind.

In considering the report for me inevitably what it says about social care is especially important. That section starts with a wonderful quote from Annie Gunner Logan which describes well the distinctiveness of social care and why it has to be considered as central and intrinsic to all attempts to foster and improve wellbeing and health.

“What we [social care] do is get alongside people when they have very significant challenges in their lives and struggle to participate in society as full citizens, and we support them, wherever possible, to make their own decisions and move their life forward as best they can. Where the world makes it very difficult for people to do that because of their age, impairment or whatever, we do what we can to help by ensuring that they are comfortable, are cared for and can have at least some kind of independence and peace of mind in their individual circumstances.”

Annie Gunner Logan Director of the Coalition of Care and Support Providers in Scotland (Health and Support Committee Inquiry into Social Care)

That is a description which shows the potential of social care to enable the individual and wider community to achieve the fulness of life and purpose that they want and desire. Sadly, in the debates I have seen and heard in the media this past week as England and the UK Parliament has considered social care funding there has been a palpable lack of real understanding of what social care is and its potential. It has been very much about the NHS and looking at social care through an NHS clinical and acute sector lens. This has sadly missed the whole point. The debate has been about cost and deficit, need and limitation rather than potential, autonomy, control, and choice. Good social care allows an individual to achieve to their fullest potential and perhaps that is especially the case where social care supports the flourishing of the person at end of life and through effective palliative care and support.

The report highlights many of the challenges facing social care if it is to enable people who want to die at home or in a homely setting to achieve their wishes without unnecessary and unscheduled admission to hospital in the last months and year of life including the need to reform commissioning, increase financial investment and better train and support the workforce. The recommendations are self-evidentially implementable.

But this past week has also seen other work not least a commitment in the Programme for Government to the creation of a new Palliative and End of Life Care Strategy and also further work in the development of a new Human Rights Act for Scotland.

We are with all these changes and initiatives at a point of real potential and opportunity. For those of us who have worked in palliative and end of life care for many years there has been a desire to create systems and models, supports and structures, relationships and freedoms, which enable people to end their life in a way which upholds their choice and dignity, supports them and their families and friends, and ensures that we become the best nation in which to end one’s life such is the quality of palliative and end of life care support.

I have written elsewhere about how this can all be encapsulated if we have the dream and ambition within our social care and human rights legislation to declare clearly that citizens in Scotland should have a ‘human right to palliative and end of life and bereavement support.’ Scotland has the legislative, policy and practical opportunity to become the first nation to enshrine such a right within our society and community. It is an opportunity which should not be lost.

Death and dying is part of everyone’s story but the way we support and care for that ending is something which is unwritten. We face the challenge to make sure that everybody’s ending tells the story of a society that enshrines the rights of choice, dignity, respect and humanity. And if it does that will be a final sentence worthy of remembrance.

The End 

Not every man knows what he shall sing at the end,

Watching the pier as the ship sails away, or what it will seem like

When he’s held by the sea’s roar, motionless, there at the end,

Or what he shall hope for once it is clear that he’ll never go back.

 

When the time has passed to prune the rose or caress the cat,

When the sunset torching the lawn and the full moon icing it down

No longer appear, not every man knows what he’ll discover instead.

When the weight of the past leans against nothing, and the sky

 

Is no more than remembered light, and the stories of cirrus

And cumulus come to a close, and all the birds are suspended in flight,

Not every man knows what is waiting for him, or what he shall sing

When the ship he is on slips into darkness, there at the end.

 

“The End,” © 1990 by Mark Strand from The Continuous Life by Mark Strand.

 

Donald Macaskill

Next Friday (10^th October) is World Suicide Prevention Day. I have written before in this blog about the challenges of mental health for older people in society. Those challenges are even more acute when it comes to considering the prevention of suicide amongst the older population.

This year’s theme is ‘Creating Hope Through Action’ and aims to empower people with the confidence to engage with the complexity of ‘hope’. There are dozens of organisations including well known ones like the Samaritans who campaign on World Suicide Prevention Day under the National Suicide Prevention Alliance (NSPA).

Together, they ask the governments in the UK and Ireland to make suicide prevention a priority and help raise awareness about how we can each support each other better.

On the day itself we are being asked to share the things that we do which helps us feel hopeful when we are going through a difficult time. For example:

• Reaching out for a coffee with our best friend
• Taking a walk in the fields and letting the wind blow everything away
• Go for a run along the seafront

Suicide affects many people in Scotland. In 2020, 805 suicides were registered in Scotland (575 males and 230 females). These numbers comprise deaths coded to ‘intentional self-harm’ and to ‘events of undetermined intent’. See

https://www.scotpho.org.uk/health-wellbeing-and-disease/suicide/data/scottish-trends/

Throughout my life I have worked with people affected by suicide and mental health challenges and whilst it is always dangerous to make any statement in this area because of the risk of it becoming trite, I think there is one thing more than anything else I have learned and that is that communication and talking are so vitally important. It is one of the reasons why I get so angry that for too many of our older citizens, whether they use social care supports or not, as a society we have steadily reduced the opportunities and chance to chat and talk, to listen and to be available. If social care is about anything it is about the dimension of care which is social and relational rather than simply about task and function.

Now I am the first to admit that conversation and communication is not easy especially if someone is distressed, anxious and upset. There are times when we worry about saying or doing the wrong thing but in most of those instances doing nothing can be just as bad.

Since its creation Public Health Scotland has produced some fantastic short animations to help individuals address the challenges of communicating on hard issues including listening, questioning and responding. You can access these through the NES website

• Animations for supporting adults

• Animations for supporting children and young people

There are a whole host of reasons why someone might be at risk of suicide including family breakdown, insecurity of life including employment, alcohol and substance misuse and so on, but over the years we have often ignored factors relating to age as key influencers.

During the pandemic many older individuals felt a sense of powerless, they endured isolation and exclusion, a sharp loss of contact and routine, and some developed a sense of worthlessness because of the way society was perceived as valuing older age. There were some older adults who felt that they were a burden to family and friends and many experienced bereavement without the usual supports of ritual and family for their grieving.

Increasingly professionals are aware of these heightened risks and some resources have been developed to support us all to be aware of the risks of suicide in older age not least as a result of the pandemic. I would personally commend the NHS Education Scotland work in this space.

Talking and listening, supporting and being present are all so critical perhaps especially at times of memory and community celebration. World Suicide Prevention Day allows us to focus on the importance of this work as professionals and as individuals and I hope we can all take some time on that day to reflect what we do as individuals and organisations and what more we might be able to do.

There are also times and spaces where silence interrupts the talk, and it is easier and better simply to sit and to be with another. It is in those spaces that I find, along with others, that poetry offers a unique insight into the emotions that many of us struggle with.

Some of you might know the poetry of the activist and mental health campaigner P.Bodi  who for me provides short but deep insight into the struggle of living and loving. In her work ‘Inherit the Dawn’ P.Bodi writes poems for hope. They are poems written for anyone who has ever struggled with their mental health, and for those who are in need of compassion, empathy, and gentle reminders to keep going.

“I will do as the flowers do

Inherit the dawn.

Tell me of the morning

And the gentler days beyond.”

It is this necessity of grasping hope which is the at the heart of the work of many poets who have written about a depth of despair that has cut them to the core, perhaps no more eloquently than Mary Oliver who has across her career written and spoken openly about issues of mental health and challenge.

I leave you with her poem, ‘When death comes.’

“When death comes

like the hungry bear in autumn;

when death comes and takes all the bright coins from his purse

 

to buy me, and snaps the purse shut;

when death comes

like the measle-pox

 

when death comes

like an iceberg between the shoulder blades,

 

I want to step through the door full of curiosity, wondering:

what is it going to be like, that cottage of darkness?

 

And therefore I look upon everything

as a brotherhood and a sisterhood,

and I look upon time as no more than an idea,

and I consider eternity as another possibility,

 

and I think of each life as a flower, as common

as a field daisy, and as singular,

 

and each name a comfortable music in the mouth,

tending, as all music does, toward silence,

 

and each body a lion of courage, and something

precious to the earth.

 

When it’s over, I want to say all my life

I was a bride married to amazement.

I was the bridegroom, taking the world into my arms.

 

When it’s over, I don’t want to wonder

if I have made of my life something particular, and real.

 

I don’t want to find myself sighing and frightened,

or full of argument.

 

I don’t want to end up simply having visited this world “

Donald Macaskill