On Monday and Tuesday of this past week I had the pleasure of spending time with colleagues from across the United Kingdom and Ireland at a meeting of the Five Nations Care Forum. This is a bringing together of senior staff from social care representative bodies and happens a couple of times a year. This spring meeting was hosted by Boots and took place in their headquarters in Nottingham.  As well as discussions on the key issues facing social care, I particularly enjoyed the opportunity to discover more about the history of Boots and the critical role of pharmacy in the support and care of all citizens but most especially for our older population.

In many ways the world of pharmacy is facing similar challenges to social care with issues  around public and governmental funding especially for community pharmacy, issues relating to recruitment and retention of staff, changes in the role of the pharmacist and the need to prioritise resource around research and development. But one thing I was continually struck by in my discussions was just how important it is that we have a constructive and positive relationship between those of us who work in social care and those who work in pharmacy. From the need to better support community care staff to assist folks in their use of medicines, and this will only grow as more and more people are supported at home rather than in hospitals, to the need to address issues of ecology and sustainability around medicine waste there is a need for a very close and developed relationship between social care and pharmacy. And as in all things this relationship needs to be nurtured at both local and national level to be of real benefit to all.

I was reflecting on all this when I discovered that in a couple of days on Monday 29th April, we will be recognising World Immunology Day. Indeed this year’s theme is “Immunity Through the Ages: Navigating the Science of Aging and Immunology.”

Some might ask why is someone who works in the world of social care reflecting on immunology? But in the light of a global pandemic which devastated so many lives and communities I would hope the role of immunology would be self-evident but also that its significance for all in both social care and in community would be better understood and elevated. Sadly, I suspect with the passage of time except for those who continue to be concerned about the impact of Covid on their own lives and those of others, for the majority thoughts of viruses and pandemics are fading into the rear or even worse are being deliberately ignored or deprioritised.

The British Society for Immunology states that:

‘Immunology has its origins in the study of how the body protects itself against infectious diseases caused by microorganisms, such as bacteria, viruses, protozoa, and fungi, and also parasitic organisms, such as helminth worms.’

This year there is a particular focus on the impacts of infectious disease amongst the old.

For those of us working in social care issues of immunology, infection prevention and control and vaccination have become centre stage to our concern and focus since Covid and for the majority of practitioners they remain so. Sadly, there are still people dying of Covid every week and there are still individuals who every week die as a result of developing other infectious diseases such as influenza. Yet the impact of infectious disease seems to be continually marginalised and ignored. So, the role of immunology remains or at least should remain of primary concern to the practitioners of social care.

When I was in Nottingham the latest report from Public Health Scotland was published and it showed a fall in Covid-19 and flu vaccine uptake for all eligible groups in the winter that has just passed when the figures of uptake were compared to winter 2022/23.

Like many I am increasingly concerned that vaccination rates seem to be going in the wrong direction. That concern has critically to do with the extent to which – despite the naysayers and anti-vaccination lobby – there is clear evidence that vaccinations have saved the lives of and protected tens of millions of individuals against so many conditions, not least Covid and influenzas.

In addressing the figures, Dr Sam Ghebrehewet, Head of Vaccination and Immunisation, at Public Health Scotland said:

“Vaccination remains the best protection against severe outcomes of both flu and COVID-19 and reduces the likelihood of severe illness, hospital admission, and in some cases death. Work is underway to understand the reasons behind the decrease in vaccine uptake. This is crucial to ensure that those most vulnerable are aware of their eligibility for vaccination.”

I suspect that some of the answer to those explorations will be (though I know this will not be articulated) a lessening in focus and priority on the role of vaccines in general not least by the prioritisation given to it through planning and resource allocation. At the height of the pandemic or most especially in the latter days of late 2020 when the first vaccines began to be rolled out, there was significant co-operation between the worlds of health and social care around vaccination both for residents in care homes, older people supported in the community and the health and social care workforce. That co-operation and joint working is sadly much diminished and so I fear that there is a lack of co-ordination, targeted support and priority.

We know for vaccination programmes to work well that vaccines need to be delivered to people in a manner which is as easy as possible. For many this will be at their local community pharmacy and for health and social care staff at their place of work. Whilst vaccines at work remain a priority for colleagues in the NHS sadly this is not the case for social care staff. Expecting workers in their own time to go and get vaccinated is inevitably going to reduce uptake not least when we are talking about those who are in roles which do not earn a lot of money and many of whom have to work extra shifts or extra jobs. As I have said on numerous occasions for a vaccination programme to work in the care sector, we need to take the vaccines to people, and we need to make sure that we address myth and scepticism which exists around vaccination.

We can and must do a lot more to protect everyone from the very known risks of infectious diseases and as my own organisation, Scottish Care, commented in response to the report, I believe that this should, include a targeted campaign to increase the confidence of all, especially social care staff, which both addresses vaccine scepticism and also popular myths and attitudes which suggest that catching Covid-19 or the flu are not serious.

Walking around the Boots headquarters and exploring the rich history of an organisation that for the last 175 years has been bringing medicines and pharmacy to the British public showed me just how critical pharmacy has been in addressing the ravages brought about by diseases. The fact that in general terms life expectancy has been extended and most live in health has been because over history we have eradicated so many infectious diseases which were once deadly. But addressing the challenges of infectious disease did not happen by accident – but rather it was achieved through targeted, joint working, relationships and partnerships at local level. So increasingly I feel we need to break down the barriers which sometimes exist between the worlds of pharmacy and social care, increase mutual understanding and professional regard, and together prioritise ways in which we can ensure all who need to be are protected from disease and infection. If the pandemic has taught us anything it has surely taught us about how important it is to work across boundaries, to know the worlds of others and to avoid silo thinking and planning.

As we think about immunology and vaccination, like many in the world of social care I think about the challenges that a new season of infectious disease, whether Covid or influenza might bring, and I increasingly wonder as to whether we really have learned the lessons of a pandemic for which we were so badly prepared. Are we working together to address known and unknown immunological threats? Certainly, given the complete absence of social care provider contribution in the current Scottish Government pandemic planning, the signs are not good.

Donald Macaskill

Home is where the health is … ageing well in place.

The following is a shortened edited version of a talk given to the Edinburgh University Advanced Care Research Centre (ACRC) Spring Symposium on Monday 15^th April.

Whether tenement flat, bungalow, farmhouse, or croft virtually every piece of research I have read or conversation I have held with folks over the years has articulated a desire to age in place, remain in place and to die in place – if all else is equal.

Space and place are intrinsic to not only our psychological sense of wellbeing but also to our physical health, not least in a community such as Scotland where health inequalities are so influenced by geography and economy. In the lottery of location, location, location where you live matters for how healthy you are or are not.

Over the years I have written and spoken a lot about what it means to belong to somewhere, and the influence that such a sense of place can have upon your health and wellbeing, or even more critically what happens to you when due to no fault of your own you are unable to ‘remain’ in your locale or when ‘you lose your independence.’

There is a rich history of research on the desire of people to live independently in their own homes for as long as possible. There is an accepted presumption of the truth of that sentiment, albeit that we also have growing evidence to show the clear health benefits of congregated or shared living when an individual may reach a particular age in life or stage of frailty.

The presumption of home first is part of the DNA of our social care policy and delivery. It is articulated in the Scottish Government’s post pandemic Statement of Intent on the ‘Health and Social Care of Older People.’ in the following terms:

‘Our vision for Scotland

We want people to enjoy a high quality of life as they grow older. Our ambition is to make Scotland the best place in the world to grow old. We want to achieve this through safe, integrated, person centred health and social care. Everyone should be able to live independently, and drive the decisions about their health and wellbeing; with their human rights respected and their dignity protected…’

All this underlined further when it states:

 ‘Home first approach

 People have told us that they would like their care and treatment to be delivered in their home or local community as much as possible. Our health and social care services must reorganise themselves to better support people to live well and independently in their communities as they age.’

Health and social care for older people: statement of intent – gov.scot (www.gov.scot)  (March 2021)

Laudable, clear, and factual in statement and intent. Hard to disagree with it.

And we can all recognise similar aspirations, notably the desire for independent living – throughout the years of policy of Scottish national government, whether in the seminal work of the key learning disability report ‘The Same As You?’ of 2000 which hastened further the closure of our long stay institutions, or the more recent passion behind the Feeley Report, the Independent Review of Adult Social Care (2021) – people time and time again have stated the desire to live as independently for as long as possible.

The ageing-in-place agenda posits that the preferred environment for older adults to age in is the community, where they can remain active, engaged, socially connected, and independent.

The question is – have we as a society paid more than lip service to that aspiration? Have we fostered and nurtured the civic and care capacity to respond in full to that desire or have and are the visions of ageing in place becoming rooted in the soil of delusion? How prepared is Scotland to enable people to age healthily in place?

I want to explore this issue of healthy ageing in place – through three perspectives, namely legislative, finance and the built environment.

1.

The first is legislative. It is sometimes lost amidst all the talk of reform and reshaping, of new creation and novel development such as the National Care Service, that Scotland already has some of the most progressive health and more specifically social care legislation in the world.

The Social Care (Self-directed Support) (Scotland) Act 2013 (SDS Act) sought to bestow upon the individual who required support and care new rights guided by the principles of participation and dignity, involvement and inclusion, informed choice and collaboration. It aimed to change practice from assessing what someone needed to maintain and survive life to determining what outcomes would enable that individual to flourish and thrive. Budgets were to be in the hands of the supported person; new models of innovative, community-based supports would be developed as flexibility, creativity and diversity were written into Guidance and advice. It was all designed to allow folks to live the ordinary lives they wanted and to participate as full citizens of their local communities. In essence it was about enabling ageing in place (before the term became commonplace.) This was primary and preventative health care dovetailing into community-based social care.

Derek Feeley 8 years later in his Review told us what those of us on the ground knew already namely that the implementation of the SDS dream had failed.

It was clear from his Review that from the experience of many of the stakeholders who had engaged in its processes that the implementation of Self-directed Support (SDS) was symptomatic of the failure to embed progressive social policy within the existent political and governmental systems. SDS failed and is still failing in part because of the impacts of austerity and economic downturn and later the pandemic but in truth the faultiness are a lot more local. Social care as delivered today and Self-directed Support as initially conceived has been and is hampered and limited by the current model of local government in Scotland and by the desire to entrench power and control within the hands of those who finance and contract rather than bestow control and choice to citizens.

SDS provides the foundation stone for a re-shaping of social care that enables the person to be in control, to utilise autonomy and exercise choice not only of the decisions made around their life but of the outcomes they want to achieve.

The legislation already exists to enable place-based healthy ageing – the commitment around implementation is what is lacking. We are paying lip service to individual choice and personal control.

2.

The second influencer upon any assessment of ageing in place must be the fiscal reality of the current moment. Folks like me who have been around this social care world for more years than we would wish to confess recognise that we have never before seen the drastic levels of savage cuts to social care provision we are facing now. What is happening in our local communities across Scotland today rides a coach and horses through legislative intent and political aspiration.

In the days and weeks that have recently passed I have come across numerous instances where individuals are having their packages of support and care reviewed, reassessed and stopped. Indeed, I know of several authorities which have established review teams ostensibly to make sure people are getting the right support but in reality to cut the majority of packages and find savings. Now in a context of fiscal waste I can understand such a measure – but we are already talking about a population who only receive services at the level of critical and emergency need. How many people do you know who as they age require less support? A few yes but the majority – no way.

Despite the self-assurance rhetoric of commissioners and local officers in health and care partnerships what we are witnessing is frankly a grotesque cost saving exercise which is putting people’s lives at risk or at best is serving to limit and diminish those lives.

Indeed, the CEO of Age Scotland Katherine Crawford warned about the precarious state of social care in Scotland, stating that:

“The longer people wait for care, the more acute their needs can become. Distressing figures from last year showed that hundreds of people died while waiting for care packages to start. For others, it is unsafe for them to be at home without the care they need, resulting in poorer health, increased hospital admissions and yet more pressure on the NHS as people are trapped in hospital.”

“The crisis in social care in Scotland is fast becoming a national scandal.

More than 10,000 people waiting for social care at home (agescotland.org.uk)

She is of course right because the latest figures from Public Health Scotland found that 6,811 people are waiting to be assessed for social care at home, with a further 3,393 waiting for a care package to be delivered. The vast majority of these are older Scots.

Because those who age in place are largely invisible, because they don’t form queues in ambulances outside hospitals or in A and E corridors – they have become the easy collateral of the phoney war which is going on in our communities. A war which proclaims a political rhetoric of more investment and funding in health and care whilst the truth on the ground is of stripped back services, packages of support being removed (often with only 72 hours’ notice) and people being quite frankly abandoned to age unhealthily. The vast majority of additional resource is helping to pay workers a better wage which is fundamental, but it is not adding to the level of support in any significant way.

We’ve turned away from an aspiration to enable people to be supported by preventative care to enable them to age in place and potentially thrive and flourish into a system which is about maintaining people. There is no dignity in a life which simply breathes in and out but whose choice, wishes, feelings, desires, and dreams are negated.

3.

There are of course other dimensions which also need to be addressed if we are to achieve a healthy ageing in place.

Central amongst these is our built environment, not least our housing stock.

In 2018 I was writing and speaking about how important it was that we started to re-design our city centres to enable them to become once again places where people of all ages were able to call home and to do so in a manner that was truly inclusive. To some extent this has and is happening, but I fear that it is a process of re-design which excludes the potential of ageing in place. But do we have an urban environment which validates and values ageing in place?

I was intrigued by the research of three Scottish based academics Brunelli, Smith and Woolrych in a paper ‘High streets, ageing and well-being’ published in the Journal of Urban Design at the start of this year. In it they explore three Edinburgh ‘village’ high streets.

Full article: High streets, ageing and well-being (tandfonline.com)

They start from the premise that ‘despite their perceived decline, local high streets in the UK remain valuable central and well-connected places that can foster ageing in place, yet their potential to sustain well-being in old age has been overlooked.’

Analysing their qualitative and quantitative data they explore older people’s well-being in four key dimensions: social well-being, sense of place, enjoyment and feeling active and sense of purpose and mastery of the environment.

Their findings include an assertion that to make these locales more age-friendly and to support older people’s well-being:

‘it is desirable to: make the public realm more inclusive, pedestrian-friendly, and integrated with public transport infrastructure; actively support the clustering of amenities, shops, services, and bus stops, anchored to a day centre/local hub; encourage attractive shopfronts to support a welcoming and safe atmosphere including the externalization of activities, for example, adding opportunities to sit outside; and increase the provision of affordable housing near and/or on the actual high streets.’

It can be achieved with collective coherent inclusive involvement of all voices in town planning, in architectural design and in urban investment. I really do believe our cities and towns can become age friendly and dementia confident. To do so we in part need to challenge the bias in the construction industry which effectively buys out ‘social housing’ targets – when did you last see a bungalow built? We need to address the issues of pavement furniture and shared pavements; of traffic lights that are far too fast, a lack of seats and public toilets, poor visual signage and so much more.

We also need to challenge the ghettoization of ageing which creates villages for those with dementia equivalent to the asylums of the Victorian era – age out of sight out of mind even in a luxury environment. Ageing in place also requires a collective reframing of workforce skills and abilities to make all retail, commercial and community staff, both in the public and private sectors confident around age and all it brings including dementia rather than simply aware.

But as the Centre for Ageing Better made clear in a report last year:

‘ simply changing the built form is not sufficient to create a more inclusive environment for ageing since places are more than physical spaces. Viable environments are articulated through a strong sense of place, defined as the social, psychological and emotional bonds that people have with their environment. A strong sense of place results from having access to supports for active participation, opportunities to build and sustain social networks, and assuming a meaningful role in the community. In contrast a feeling of displacement or ‘placelessness’ is associated with alienation, isolation and loneliness, often resulting in adverse health and well-being outcomes, particularly amongst vulnerable older adults.’

To conclude if home is really to be where the health is, where people can age in a manner that allows them to grow and change, thrive, and flourish, then it requires the collective will of designers and architects, planner and politicians, economists, and employers to create the spaces and places that allows for that. It demands a vision of ageing where those who age are in control, not just at the centre of someone else’s concern. Technological innovation can take us part way down that road but without the societal willingness and political investment it will be a wasted journey.

Donald Macaskill

Photo by Katie Barrett on Unsplash

The month of April is Stress Awareness Month which has been held every April since 1992 and which is designed to increase public awareness about both the causes of and cures for what in many parts of the world is a stress epidemic.

Stress has been a topic and theme that has always interested me both in a personal and professional way. My interest probably started when as a teenager I was aware of two adults in my life who were deeply affected by stress. One was an individual who worked constantly and relentlessly – people around him tried to get him to slow down, to take a break, to look after himself by eating better and not drinking so much. All of it was to no avail as he powered on to the get the next task done with an invisible deadline focussing his mind and work pressure dominating his priority. He used to dismiss concern by saying he was a ‘workaholic’ and he needed therapy not criticism.

He quite literally worked himself to death because one day he dropped dead in his late fifties of a massive heart attack. At his funeral people talked about how his stress and workaholism had killed him with someone in my earshot opining that “There are too many in this graveyard who are there because of stress.”

The other person I’m thinking about was someone who was continually anxious and who was always concerned that what they did or how they performed was never good enough. They had held down a good job but over time they got more and more anxious and their life and relationships began to be deeply affected by the pressures they felt they were under at work. Despite very real and honest attempts by managers and employer they continually felt that they were falling short and what started as occasional days off work morphed into days and weeks. After a while they were in the language of the time ‘signed off with stress.’

Two very different instances but with one common link – stress. After this I went on to study the nature of stress and in particular occupational burnout and its relationship to self-identity. After conducting just short of a hundred interviews I realised just how complex the whole nature of stress was but just how devastating it could be not just for occupational role but for your very health and wellbeing and the relationships you were or were not able to have. Stress really was and is a killer and can change lives dramatically.

According to research in 2022/23:

• There were 875,000 cases of work-related stress, depression or anxiety.
• Stress, depression or anxiety accounted for 49% of all work-related ill-health cases and 54% of all working days lost due to work-related ill-health.
• The main work factors cited as causing work-related stress, depression or anxiety include the demands of the job, lack of control, lack of information and support, work relationships, and roles and responsibilities.

There is a huge amount that organisations and employers can do which not only fulfils a legal duty, but I would argue a moral one, to ensure the health and wellbeing of their employees. Doing so as the HSE argues is good for business as it increases productivity, reduces sickness absence and nurtures staff.

In the last few years, we have seen across the board an increased awareness in targeted resources and support to improve mental wellbeing for the workforce not least after the pandemic.

Having said all that – and we certainly need to continue to resource and develop practical work-based mental health supports – I think there is much more to reducing stress than responding with support after stress has occurred – there are clear preventative approaches.

One of the few insights I have gained over the years in researching and reading about stress is that there is an inextricable relationship between the stress one experiences in work or life in general and the extent to which your role or job of work is valued or you feel valued personally in life or relationships.

When I interviewed people nearly three decades ago about what made them stressed – yes the volume of work, lack of structure of support, financial and other pressures all were commonplace – but what was highlighted more than anything was the extent to which they felt they were not valued in their role.

Jump forward to conversations I’ve been having in the last 4 weeks, and it has felt to me as if I’ve turned back the clock. Time and time again home carers, nurses in care homes and managers in care services have told me that what affects them and their colleagues more, what adds to the stress is that they feel the job they do is not valued, understood, respected, or considered of worth by others around them. Put simply they are saying to me that a significant part of the stress they are enduring is because of a perceived lack of worth and value impacting on both occupational and personal self-esteem.

The pandemic brought about the moment of the clapping syndrome – where every Thursday (eventually for social care) people would gather in the street or on their front steps and visibly thank key workers by clapping. But no sooner had the claps echoed into silence, frontline care staff fell into the old routine and habit of being told they were ‘just a carer’; of others being more rewarded by pay increases, of struggling to get people to consider that social care was just as important as the NHS. People like me go on about this imbalance a lot – for instance how we have a ministerial role which talks about NHS Recovery but not one for the equally if not more pandemic traumatised social care world and workforce. At the frontline, workers are stressed to an extent and degree that I and others haven’t witnessed – it is a set of system harms resulting in real illness, fatigue and burnout.

But for many it isn’t just about salary and reward, about systems and models, it is about how society does or more honestly does not value the job and role, the professionalism and expertise entailed in the role of frontline care work.

Collectively we will only address the burnout and stress, the breakdown and despair at the heart of both paid and indeed even more so unpaid care, if as a whole community and society we start to value care and support as the heart of our being community with one another.

I know that many carers love and find huge personal satisfaction from their job and what it brings and means to the people they support – the truth of that is seen in the long service and dedicated professionalism of thousands of women and men who would be capable of earning so much more in other sectors. But we also, I would suggest, have to recognise those we lose to care, those who leave and give up, those who are stressed and burnt out because they simply don’t feel valued or wanted by wider society. As one put it to me recently. ‘“What I do is who I am. I can’t imagine not being a carer. But there are so many who think my job is of no consequence and who brush me aside. When that happens, I feel so empty and just want to scream.”

If we are to address workforce and personal stress in the care sector, we must surely start by valuing the very essence of the role of care and support? Sadly, we have a long way to go on that journey but it has to start sometime.

Donald Macaskill

Photo by engin akyurt on Unsplash

 

On April 11^th there will be a global coming together for what for a number of years now has been recognised as World Parkinson’s Day. It sits within Parkinson’s Awareness Month which is designed to increase knowledge about and awareness of the condition. Like many people Parkinson’s has touched my life professionally and personally. It is a condition which affects around about 13,000 people in Scotland and every week it is estimated that around 30 new people are diagnosed with Parkinson’s. Anyone working in social care services and supports will be aware of the extent to which this condition affects the daily lives of so many across the country, and also how poor our response to the condition has been and still is. Those of us working in social care recognise the truth that Parkinson’s is the fastest growing global neurological condition.

This was exceptionally well argued in the latest report from Parkinson’s UK in Scotland, which was published in January 2024. The report is entitled ‘Scotland can’t wait’ and is a cogently argued, data packed document listing the many gaps in support for people living with Parkinson’s and affirming the truth that these people and those who support them cannot continue to wait for the issues of failure to be addressed.

It is, sadly, a very familiar story to so many people who live with neurological conditions in Scotland today. Whether it is dementia, or MND or Parkinson’s there is a systemic failure to respond to conditions which can be significantly supported and alleviated were the right support to be in place. We may as a system and nation be good at publishing plans and strategies but our implementation and driving of real change that makes a difference on the ground falls woefully short. This truly is a failure to care.

The ‘Scotland can’t wait’ report has a whole host of recommendations for NHS Boards, on investment in medication, on workforce development and increased capacity and much more. It is worthy of both reading and wider dissemination. A section which particularly interests me is one which emphasises the need to do more around mental health and in relation to those who live with Parkinson’s who develop dementia.

Parkinson’s manifests itself in diverse ways and no two people demonstrate and evidence  the exact same responses to the disease. It is estimated that there are over 40 distinct characteristics that make up the Parkinson’s condition. The NHS website describes it in the following terms:

Parkinson’s disease is a condition in which parts of the brain become progressively damaged over many years.

‘The main symptoms of Parkinson’s disease are involuntary shaking of particular parts of the body (tremor); slow movement and stiff and inflexible muscles.

A person with Parkinson’s disease can also experience a wide range of other physical and psychological symptoms. These include depression and anxiety, balance problems (this may increase the chances of a fall), loss of sense of smell (anosmia), problems sleeping (insomnia) and memory problems.’

In Scotland it is estimated that 30% of those living with Parkinson’s have dementia and an estimated 50% need support with daily activities. The conversations I have with both care home and care at home providers and front-line staff illustrates that supporting people with Parkinson’s is increasingly also about supporting people who are living with Parkinson’s and dementia.

The recommendations of the Scotland report highlight the gaps and they range from a lack of awareness amongst NHS generic mental health professionals about the nature of Parkinson’s; the need to increase the neuropsychology and neuropsychiatry workforce to meet the needs of people with neurological conditions to the need to develop better support for future care planning (including Powers of Attorney) before someone develops dementia.

Over the years I have noted a growing relationship between some Parkinson’s services and the social care and dementia service sector, but this occurs more often than not through local relationships and professionals committed to working collaboratively around the needs of a person. The Parkinson’s UK Scotland report quite rightly argues that such collaboration and co-ordination needs to be much more systematic, planned and adequately resourced. At the moment I very much fear that people living with Parkinson’s who develop dementia are being doubly excluded and not achieving the level of support and care for their dementia that they rightly deserve. The idea of joint clinics and the inclusion of Parkinson’s specific education within general social care dementia training are two good examples of how progress could be made.

In speaking to a family member recently she remarked to me how she thought she was well prepared and aware of what the Parkinson’s journey was going to mean for her partner but that she had been blind-sided by the changes in him which she now (with hindsight) recognised as his developing dementia. These included him starting to have bad and frightening dreams, his inability to make a decision and keep to an agreed plan or action; that he was finding basic activities like getting dressed or using the TV remote control really difficult. She had not known of the significantly increased risk of developing dementia if you have Parkinson’s and neither, she told me, had most of her friends in support groups been aware of this factor.

A real legacy of this year’s World Parkinson’s Day would be for there to be positive action at all levels, not least national government, to address the recommendations of the Scotland can’t wait  report and for those of us who work in and deliver social care supports, not least dementia, to better understand the consequences of a condition which is still so misunderstood and sadly all to frequently ignored.

Over the last couple of years, the Parkinson’s community shared hundreds of poems with Parkinson’s UK for World Parkinson’s Day 2022 and 2023. They were happy, funny, sad and thoughtful and told the world how Parkinson’s has affected individuals. Here is one which demonstrates the positivity of so many I have known who have lived with Parkinson’s. But that positivity demands Scottish society and care and health leadership to play its part because Scotland truly can’t wait.

Shiona from Dumfries and Galloway  wrote:

I can still breathe

I can still bend

I can still laugh

I can still love

I can still fly

Donald Macaskill

This past week I have had a couple of conversations which though significantly unconnected have in my mind touched and influenced one another. One had to do with reaction to a television advert from the Alzheimer Society, the second a conversation with a Filippino care worker who is preparing to celebrate Black Saturday today.

The Long Goodbye is a very emotional television advert with a voice over by the actor Colin Firth which shows a son delivering a eulogy at his mother’s funeral and recalling the many moments in his mother’s dementia experience where a part of her ‘died’ ‘again and again’.

The advert created by the Alzheimer Society has resulted in a wide debate on social media and amongst dementia organisations about its merit and what it says about the lives of those who live with dementia. Many have stated that it diminishes the lives of those with dementia by presenting it as a series of deaths and losses.

The CEO of the Alzheimer Society, Kate Lee in response to the ‘backlash’ commented:

“This campaign seeks to tell the unvarnished truth about the devastation caused by dementia and it is very much informed by people affected by the condition.

The loved ones of people with dementia often describe it as a ‘living grief’ as, bit by bit, the disease’s relentless progression causes part of the person to die…again and again and again.

“But there is hope. Alzheimer’s Society, through its support services, is there for people affected again and again as they face the grim reality of the long goodbye.”

The Alzheimer Society has gone on to argue that the advert was created and made with people who have dementia and their families, that it is seeking to raise awareness of the fact that 900,000 people have dementia and that nearly 80% of respondents to a recent survey weren’t aware that one in three people born in the UK today will get dementia. It argues that ‘Many may find the advert upsetting. But the reality is that dementia is devastating.’ They argue that this campaign is not about fundraising but raising the awareness of wider society that current approaches to dementia cannot go on as they are as we move to a situation where by 2040 1.4 million people will be living with the condition.

This past week I have had several conversations with both individuals who are living with dementia but also their family members and allies and everyone has mentioned the TV campaign. It has led many to feel despair and hurt and indeed shock about the way in which it portrays living with dementia.

Having watched the clip myself part of me can absolutely see what the creators were trying to do and achieve, but a huge part of me cannot but feel this is a massive and damaging misstep by a charity which should be focussed on the affirmation of life regardless of diagnosis.

I know just how upset and hurt people have been and how staff in care homes and in the community have had to speak about these issues with residents and clients.

At the centre of the debate about the advert is the issue of anticipatory grief something I have spoken and written about a great deal. What does it mean and how does it feel to live your life in the knowledge that the disease within you will kill you? How do you as an individual and those who are around you in a company of love and compassion deal with the changes which are happening because of the disease? How do you better support yourself for the act of dying and the work of grieving?

For me there are no easy answers to any of those questions and the way in which I have worked through the loss of a loved one has been and will be different to anyone else. But what has been important for me is that every moment mattered, every conversation counted, and that the preciousness of time became an invaluable gift. Far from my losing a loved becoming a series of long goodbyes I tried (and admittedly didn’t always achieve) to have a sense of every encounter being a new beginning or a hello, an introduction to a new part of the person; a realisation that even in barrenness and hurt there was growth and newness, possibility and promise even in pain and emptiness. That the person I loved was still the person before me, just different, still wanting and reaching out for love and touch, for a renewed sense of being held by my humanity.

I mentioned another conversation I had this week.

This was one I held with a nurse who was working in a care home and who comes from the Philippines. We were chatting about the upcoming holiday weekend, and I asked her what she was planning. She told me that she would be celebrating Easter Sunday but that first she would be recognising Black Saturday which was so important to her, her culture and to many other people from the Philippines.

I discovered from her that Black Saturday was a day of fasting for Catholics in the Philippines and that it commemorated the day that the crucified Jesus lay in his tomb after he had died on Good Friday. It was the day in between deep sadness and celebratory joy. I was told that Black Saturday is a significant day for people in the Philippines. It is recognised in diverse ways including the famous healing rituals in Siquijor where traditional medicines using herbs and roots are created. It is a day of quietness, limited noise, peace and solemnity.

But importantly my partner in conversation said that it is a day when you are meant to spend time thinking about how you are living your life in the face of your own death; how you are healing the relationships which might be fractured or broken; how you are using your voice to speak peace and healing; how you are using your hands to bring solace and purpose. It is an active day of contemplative preparation. It is a central requirement between loss and hope to be open to listening, active in preparation, and instinctive in being with others.

It struck me as she spoke to me and as I reflected later on the real upset caused by the Alzheimer advert that Black Saturday was all about anticipatory grief.

So I will spend some part of this Saturday thinking about how I can better support those who wait upon death. I will do so not thinking that every moment has to be strained of joy and purpose but in honesty being prepared to accept that the tears of living are made with joy and sadness. I will remember those moments when my heart panged with a sense of loss caused by the changes of a look that did not remember me or a memory lost into time, and I will reflect on my truth that despite all the absence that there was an astonishing presence of love and touch, of togetherness and being.

And yes, I will in the days and weeks ahead try to convince others of the importance of being more aware, more committed, more energetic in righting the wrongs of a society that displaces dementia and those who live with the disease, that treats them with financial and care discrimination, one that is so unequal.

I do not and cannot believe that a life facing a dementia death is calculated by a series of losses, but rather I have to and will continue to believe in the immeasurable arithmetic of presence and positivity.

I am reading a lot of Rupi Kaur these days, and this poem ‘funeral’ spoke to me this week, a week of anticipatory grieving for so many.

when i go from this place
dress the porch with garlands
as you would for a wedding my dear
pull the people from their homes
and dance in the streets
when death arrives
like a bride at the aisle
send me off in my brightest clothing
serve ice cream with rose petals to our guests
there’s no reason to cry my dear
i have waited my whole life
for such a beauty to take
my breath away
when i go let it be a celebration
for i have been here
i have lived
i have won at this game called life

[POEM] Funeral by Rupi Kaur : r/Poetry (reddit.com)

Donald Macaskill

Photo by Rebecca Matthews on Unsplash