Today, is World Alzheimer’s Day, and every year when this day comes around I’m sure I am not the only one who pauses to remember the lives I have known, not least my own late mother, who have been affected by dementia. It is a day for reflection and remembrance but also, I think a day when we should seek to re-focus and renew our efforts and energies in the battle against this pernicious disease.

I have spent a couple of days in London this past week at various meetings and been inspired by people and projects which are every day seeking to make a difference to those who are living with dementia and to their families and friends. And the emphasis upon ‘living with’ is important.

It’s also been a time when I’ve been reflecting on the extent to which things have changed for better or worse in our support around dementia in Scotland.

Scotland has long been recognised as a leader in progressive dementia care. Our approach is shaped by a commitment to compassion, human rights, and person-led support. I really do sincerely believe and have personally witnessed the truth that this commitment is not just a policy or a strategy; not just rhetoric and empty words but it is a deeply held conviction that every person living with dementia should have the right to live their lives to the fullest, regardless of their diagnosis.

The Scottish Government’s Dementia Strategy, now in its third iteration, ‘Everyone’s Story’, continues to focus on key priorities: ensuring timely diagnosis, providing personalised care and support, and promoting the rights and participation of people living with dementia. It recognises that dementia is not just a medical condition but a profoundly human experience that affects every aspect of life. That is why our approach in Scotland is aimed at being holistic — it encompasses healthcare, social care, community support, and a commitment to upholding the human rights of those living with dementia and their families.

I have been vocal in my contention and criticism that all these positives without an underpinning of resource and fiscal prioritisation are leaving the dementia community in Scotland far short of the aspirations and goals we all want to achieve. We will sadly never ensure that every person living with dementia is supported to live well and with dignity unless we are prepared to pay for that fulfilment to become reality. Indeed, the experience of so many living with dementia at the moment is care packages cut and waiting weeks to get a care home placement – all suggesting a lack of fiscal priority.

Social care practitioners in Scotland recognise that people with dementia are not passive recipients of care but active participants in their own lives. Our task is to support their autonomy, enable choice, and promote independence.

One of the most important developments in recent years has been the adoption of a human rights-based approach to dementia care, grounded in the principles set out in the UN Convention on the Rights of Persons with Disabilities (UNCRPD). This approach ensures that people living with dementia are treated with dignity and respect, that their voices are heard, and that they have access to the support and services they need to live well in their communities.

But perhaps the one thing which I celebrate the most today is the way in which the isolating nature of dementia is being addressed up and down Scotland through the work of dementia friendly communities and meeting centres. These communities are not just about putting up signs or making superficial changes; they are about fostering real understanding, compassion, and connection.

A dementia-friendly community is one where every individual, from shopkeepers to bus drivers, from teachers to local government officials, understands the condition and knows how to respond with empathy and practical support. It is a community where people with dementia can continue to do the things they love — go to the football match, visit the library, or simply enjoy a cup of tea with friends.

It is no accident that Scotland’s approach to dementia is rooted in community, for such is the heart of all social care. Dementia affects not just the individual but their family, friends, and the wider community. It is critical to recognise the community dimension of dementia and other long term conditions and to affirm that communities have a vital role in supporting people with dementia and creating environments where they feel safe, valued, and included.

But we must also recognise that true community inclusion goes beyond creating welcoming spaces; it is about ensuring that people with dementia have meaningful opportunities to participate in community life. Whether it’s through volunteering, participating in social activities, or simply having a chat with a neighbour, every connection matters.

Equally on this day we cannot forget the thousands of unpaid carers — the family members, friends, and neighbours — who provide the bulk of care and support for those living with dementia. They are the true frontline of care and compassion, often juggling work, family commitments, and their own health, while providing loving, tireless care.

In Scotland, we are committed to supporting these carers, who are often stretched to their limits physically, emotionally, and financially. The Carers (Scotland) Act 2016 has been an important step forward, offering carers a right to support, advice, and respite. However, there is still a huge amount still to be done to ensure that carers are recognised, valued, and supported in their own right.

On this World Alzheimer’s Day, we must renew our commitment to supporting these carers. The Carers Act was a significant step forward, but we must do more. We need to ensure that every carer has access to the support, respite, and recognition they need and deserve. No carer should ever feel alone, overwhelmed, or undervalued. Their contribution to our society is immeasurable, and it is time we matched our words with deeds.

This year’s theme for World Alzheimer’s Day, is “Never Too Late to Make a Change.” It is a clear call to action — a reminder that it is never too late to ensure that every person with dementia in Scotland has their rights respected, their voices heard, and their choices honoured. We are not there yet!

We must continue to advocate for a health and social care system that is worthy of the name — one that is grounded in the principles of fairness, equity, and rights. We must push for a social care and health system that does not treat dementia as an afterthought but as a priority, ensuring that everyone, regardless of where they live, receives the care and support they need.

And we must never lose sight of the fact that behind every statistic is a person — a person with dreams, desires, and a deep need for connection, belonging, and love.

We strive every day to create communities where dementia is met not with fear, but with compassion; not with silence, but with advocacy; not with resignation, but with hope.

Let today be a reminder that it is never too late to make a change, to be kinder, to be more inclusive, and to ensure that every person living with dementia has the chance to live life to the fullest.

Regular readers will know I’m in a Jackie Kay mood at the moment as I re-visit her poems. One that has always spoken to me about memory and loss and about my own family dementia story is her poem ‘Keeping Orchids’. In this poem she has written poignantly about identity, family, and the fragility of memory, which when I first read it resonated deeply with the experience of dementia.

The reference to flowers that hold onto life and memory, buds that remain closed like secrets, served for me at least as a metaphor for the complex, often fragmented experience of memory and identity in dementia.

‘Keeping Orchids’

The orchids my mother gave me when we first met

are still alive, twelve days later. Although

 

some of the buds remain closed as secrets.

Twice since I carried them back, like a baby in a shawl,

 

from her train station to mine, then home. Twice

since then the whole glass carafe has crashed

 

falling over, unprovoked, soaking my chest of drawers.

All the broken waters. I have rearranged

 

the upset orchids with troubled hands. Even after

that the closed ones did not open out. The skin

 

shut like an eye in the dark; the closed lid.

Twelve days later, my mother’s hands are all I have.

 

Her voice is fading fast. Even her voice rushes

through a tunnel the other way from home.

 

I close my eyes and try to remember exactly:

a paisley pattern scarf, a brooch, a navy coat.

 

A digital watch her daughter was wearing when she died.

Now they hang their heads,

 

and suddenly grow old – the proof of meeting. Still,

her hands, awkward and hard to hold

 

fold and unfold a green carrier bag as she tells

the story of her life. Compressed. Airtight.

 

A sad square, then a crumpled shape. A bag of tricks.

Her secret life – a hidden album, a box of love letters.

 

A door opens and closes. Time is outside waiting.

I catch the draught in my winter room.

 

Airlocks keep the cold air out.

Boiling water makes flowers live longer. So does

 

cutting the stems with a sharp knife.

 

Keeping Orchids by Jackie Kay – Scottish Poetry Library

Photo by Kyla Flanagan on Unsplash

Donald Macaskill