Better elderly care: what might it look like?
If we all did one thing a little bit more, I think we could make a serious change.
I must confess I’ve lured you here under false pretences. Yes, I will absolutely explore what, in my opinion, better elderly care might look like, but (spoilers) it’s not just providing more exercise & balance classes for the over 65s to mitigate falls risks. I think better elderly care entails an overhaul of society. If this sounds ambitious, good. We should be ambitious. We have the means and the desire to treat our elderly (globally) more equitably, which should be in everyone’s best interests seeing as we will become them in no uncertain terms. What I feel we lack is a bit of oomph. We can’t just reform social care policies and process and expect attitudes toward the elderly, and ageing itself, to be magically transformed. I love the elderly. I think they’re diverse and wonderful, but I think society isn’t well equipped to support a lot of their needs, and so they do not, on the whole, thrive. We can do better.
I have a very positive attitude towards ageing; in comparison to the episode of Friends where Rachel turns 30 and cries the entire day, when I got to this milestone, I was simply thrilled to have made it. I hired out a little independent cinema and watched Jonathan Creek with all my friends (which probably tells you a lot about me without saying much). You see, for the past ten years I’ve lost friends to suicide, to sudden (usually road traffic) accidents, to chronic and acute disease complications. “Better over the hill than under it” I joke mercilessly to aghast acquaintances while they lament what they consider to be their annual, steady decline. This has always struck me as rather odd; people of my generation, race, and socio-economic background are very likely to live into their late eighties. There are many, many people alive today in the UK (where I am from) who will live to over 100; indeed, past the age of 105, your likelihood of dying actually levels off, instead of continually increasing in step with your age. In numerical terms, I’m barely past the first third of my life. Why on earth would I think I was running out of time?
As a healthcare professional with a background in linguistics and anthropology, I think this is largely due to the way we socially frame ageing in our minds, and how this is perpetuated and reinforced through media, stereotypes and social roles. It’s almost as if the elderly embody a human “planned obsolescence”, whereby when a person reaches what’s considered a non-productive age (currently 65) they are removed from the only process we currently consider to be worth investing time and money in — the workforce — and replaced. I have worked with many, many people above this age who are sprightly and perfectly capable of still contributing to society, in a paid capacity or otherwise, and many under 65 who are not. As multiple established authors across disciplines in ageing have already confirmed: age is no measure of health, ability or intent. It may tell us someone’s biological years, but it tells us nothing about their current level of function, or their personhood.
This concept of function is close to my heart. I worked as an Occupational Therapist (OT) in the NHS and measured people’s functional ability post-illness or injury every day, then mapped this to “and what do you usually do every day? Which things are important to you? How can we get you from here to there?”. OTs save money for services & CCGs, and improve quality of life for people. We keep older adults out of hospital and safely at home. We promote independence — it is our professional buzzword. OTs have been working tirelessly in the community and in acute settings to ensure people (especially the elderly) affected by COVID can rehabilitate and resume normal life safely, on top of their usual burgeoning caseloads — like much of health and social care, demand for OTs outstripps supply.
I was struck recently by a line from Paul Corrigan CBE’s blog; “social work and social care have grappled with this issue for decades — how do we offer help whilst ensuring that service users maintain and develop independence?” for which part of the answer, to me, is simple: ensure access to Occupational Therapy and meaningful occupation (more on this later). When I worked in the community supporting older adults with mental health problems in south London, for example, I visited a lady who was very anxious and couldn’t leave her house unassisted. Social care input was ensuring she had enough food being delivered. Her mobility was wonderful, but I could see her anxiety was near-insurmountable. It was professionally in my and her best interests to enable her to be able to do this successfully on her own, and that’s what my intervention revolved around. After 6 weeks, she was able to leave the house and go to the shops; something she had not managed in years. It was with sadness but much pride that she was thus discharged from the service and I was not able to see her again to ensure she actually wanted to do it thereafter, and that’s what I think we can improve.
What is occupation, and why is meaningful occupation important?
In the context of OT and health & social care, “occupation” means anything a human does with their time. Its scope is far wider and more holistic than the lay usage of “occupation” (the job you are paid for). To understand why this is revolutionary, one must appreciate the contemporary landscape of health provision. Incisive and insightful British institution and neurosurgeon Henry Marsh, I was pleased to read, relentlessly advocates for acute doctors to include a patient’s occupation in a run-down of essential information when handing over to or updating other members of the Multi-Disciplinary Team (MDT) which huddles around a patient to provide the careful web of required specialist care. Doing this not only alerts the team to possible work-related diseases, he argues, but reminds them “that the patient is a person, an individual, has a life and a story beyond being a mere anonymous patient with a disease.” Historically, health systems are more concerned with your sodium levels than the number of stairs you have at home, or whether you can get dressed on your own, or your hobbies.
The concept of meaningful occupation is a central tenet of occupational therapy. All humans spend their days (and nights) differently, value different things, have preferences and activities that make them who they are. The science and art of OT is identifying those meaningful activities and idiosyncrasies with each individual, and working collaboratively with them to ensure that these activities can still be achieved and undertaken despite or during rehabilitation from illness or injury. The humanising triptych of engagement, choice and responsibility — so often taken away from the elderly — beget meaningful activity, strengthen relationships, and improve quality of life.
I believe we do not do enough to promote and support meaningful activity for the elderly in our society. But I really think we can improve with a shift in society, and everyone stands to benefit.
Ideologically and practically, a big turning point and change in meaningful activity for older adults is currently retirement.
A caveat here: I’m not an expert on policy changes or the inner machinations of government, so I will speak purely from a clinical and anthropological perspective. It’s not within my remit (without doing a lot of research) to make policy suggestions — I’d suggest reading Camilla Cavendish’s excellent book, mentioned at the foot of this article, instead — but I will nevertheless continue my societal thought experiment, backed up by some context.
When I was growing up, the concept of retirement sounded like utopia. No work! All play! Now I’ve worked with and lived with and listened to older adults, many of whom had a rather negative experience of retirement, I’ve come to think of it as the word suggests: u-topia (literally “no place” or “no where”) and not the eu-topia (“good place”) I had imagined. Many people I have spoken to, now in their 70s and 80s, discovered that upon reaching mandatory, arbitrary state retirement age, the loss of the routine, relationships, meaning and personal identity that the jobs had instilled in them left a large hole in their day and an existential bereavement. Indeed, my father attempted a semi-retirement and simply didn’t enjoy it. He was lucky enough to go back to work into a field which keeps him challenged and he is greatly appreciated to this day. There is a curious imbalance in how this affects the sexes — women, says Susan Nolen-Hoeksema, who was the leading researcher on rumination which is very common in those living through a sudden change of circumstances, are generally socialised to place a higher value on relationships throughout life than men. Additionally, in the current cohort of over 65s more men than women have had continuous careers. As a result, men, on the whole, currently feel the loss of the workplace role and relationships more keenly. There is rarely another fully-formed role to side-step lightly into once you become retired. There is no simple replacement for that huge, and hugely meaningful, activity.
There are arguments for increasing the retirement age (I mean, if we’re living longer and not saving more than we are currently, that would seem prudent), and for keeping people who are fully capable and desirous of continuing their employment in their current roles. However, whatever the retirement age, I think we need to have stronger communities and a wider conversation around how to stop the “cliff-edge” experience of ceasing to undertake paid employment. Abi Curtis describes the feeling of losing one’s sight in an incredibly expressive way — “an oubliette down which one is forced to fall” — and I hear echoes of this in listening to many experiences of the start of retirement.
But this is not the end! Every next level of life, as the unexpectedly erudite Leonardo DiCaprio once said, will demand a different you; a time for reinvention is a blessing. At such a juncture, I would argue, “our lives are not severed, but woven anew” (this is from, of all places, Call The Midwife, and yes I do squirrel quotes like this away for a rainy day) and indeed it does take half your life before you discover life is a do-it-yourself project (another quote, this time from Napoleon Hill). Michael Bhaskar, in his exploration of the concept of curation in humanity, says that the curation of identity “is built on growing individualism […] but it is all undergirded by the growth in choice.” Let’s face it, we do not currently give the vast proportion of the dependent elderly many choices of activity beyond bingo or day centres; perhaps this reveals an uncomfortable implicit bias in what we consider older adults to be worth. With this choice of meaningful activity severely limited, and human interaction often less frequent (1.4 million older adults struggle with loneliness, and 225,000 often go a week without speaking to anyone) it is little wonder the British Geriatric Society reports that depression is the most common mental health problem of later life.
The culture shift of which I daydream — often — and think would have a drastic effect on this is: volunteering.
Volunteering is brilliant. Not only does it build communities and add value in myriad ways, more often than not it provides the essential humanity-based adhesive between the tiles of process and corporation. I will never forget the volunteers during my 6 months of A&E who flitted serenely between bays dispensing that stalwart British intervention, the cup of tea, as well as a reassuring hand on the arm, or a minute or two of really listening to concerns. Not everything that counts can be counted.
There are some companies, usually BCorporations (or BCorps, those balancing “the highest standards of social and environmental performance”), who, among other initiatives, encourage employees to volunteer during work hours. Having worked for one of these companies, I can certainly agree it’s a good idea; however, I don’t think we’re taking it far enough. The dominant contemporary narrative in our shared lives is that of paid employment and working five days a week, even though countries — even companies, like Microsoft — who are starting to work 4 days a week report both lower stress levels and higher productivity. Therefore, I think we should work less and volunteer in the community more to improve elderly care.
Well, for a variety of reasons.
It’s good for you
Research shows that volunteers show both a greater feeling of accomplishment and an increase in brain volume in the hippocampus compared to a control (people who weren’t volunteering). Daniel Levitin, neuroscientist and author of “The Changing Mind: A Neuroscientist’s Guide to Ageing Well”, points out that in one study, male volunteers in a study over two years showed a decrease in traditional ageing markers worth three years. In a society where elderly care volunteering usually revolves around having things done for or to the elderly, it appears there is definite scope to say the volunteers benefit from the experience as well.
Despite the constant, rather classist thrum declaring “care work is unskilled” — now thankfully being challenged thanks to COVID hurling the many types of care work into the spotlight — experienced professionals and family members will confirm: providing humane support may not be predominantly academic, but it is unarguably incredibly skilled. It also exercises vast neural networks, argues Levitin, “keeping them tuned up, in shape, and ready to fire. In good conversation, we listen, we empathise. And empathy is healthful, activating networks throughout the brain, including the posterior parietal cortex and inferior frontal gyrus”. As keeping your cognition in shape is vital for healthy ageing, volunteering could be a way to support your own health in ways your 5k jog simply doesn’t.
Lastly, volunteering is associated with increased conscientiousness. This trait, according to multiple specialist psychologists in ageing, is the single most important factor in determining successful ageing. This is not genetic; the entire field of psychology is premised around the concept that you can change yourself, and thus become more conscientious — and the benefits, according to Levitin, will still accrue to you.
It’s good for older adults
Armed with this knowledge that volunteering actively benefits those who do it, let’s change the traditional narrative a bit. Though many older adults are active in their communities, the infrastructure does not exist to make it widespread, and it is not common in the public narrative. In addition, volunteering varies across demographics and carries different effects. Ethnic minorities in the UK live within a social, economic and political infrastructure which has not been designed with them in mind, and yet minority communities have different uptake of volunteering — the Black community has a higher rate of volunteering than the White community, year after year, despite constituting just 3% of the UK population. The impact of ever-present structural (and overt) racism and allostatic load on minorities is non-trivial. The cumulative weight of systematic disadvantage and this increased, essential unpaid labour in demographics such as Black women can negatively affect health outcomes. Let’s engage public bodies, charities, the media, the public, expose these inequalities, share the load of this unpaid labour, and aim for equity across older adulthood and wider society. We know we aren’t engaging older adults in society enough, so for everyone’s sake, it’s time we did better.
Providing meaningful activity in the latter stages of a person’s life can have profound implications. In an uncanny parallel of Daniel Kahneman’s findings in pain research, Levitin found “a happy life that ended abruptly was considered more desirable than a happy one with five extra years tacked on at the end that were merely pleasant but not as happy as before. In contrast, a terrible life was considered more desirable if it was longer, provided the last five years — although still unpleasant — weren’t as terrible as life had been before.”
As aforementioned, it is the trinity of engagement, choice, and responsibility which brings such wholesome outcomes. For the unfamiliar, I will quote Levitin again on an oft-cited landmark study from the 1970s; bear in mind nursing homes are usually where residents are discouraged from autonomy and activity under the well-intentioned guise of allowing them to “relax”:
Half of the residents were given a potted plant and told that the nursing staff would water and take care of it. The other half were first given a choice of whether they wanted a plant or not and, if they said yes, were told it was their responsibility to take care of it. This simple, almost trivial-sounding intervention had dramatic consequences. The residents who had even this small amount of choice and responsibility, for a houseplant, were happier and more active. They spent more time visiting with others and talking to staff. They were significantly more alert.
Once again I hear a quote chime in my head: “the greatest untapped source of motivation is a sense of service to others” (Susan Dominus).
It’s good for society
The fact is, as David Orr so beautifully phrased it, the planet simply “does not need more successful people. But it does desperately need more peacemakers, healers, restorers, storytellers […] it needs people of moral courage willing to join the fight to make the world habitable and humane. And these qualities have little to do with success as we have defined it.” The inimitable social & technology strategist Natalie Nzeyimana pushes people to re-evaluate their relationship with work, instead understanding work as “part of a broader commitment to making the world more equitable”. The Centre for Ageing Better in the UK runs numerous initiatives to improve access to age-friendly volunteering for all, but they admit there simply “aren’t enough inclusive opportunities for people to participate in community activities and do the things they enjoy and that matter to them.”
In addition, I believe volunteering could go a serious distance to addressing some of the very real but not widely appreciated health inequalities that different populations face (see the King’s Fund for more information). Though some diseases do not appear to discriminate based on race, gender or any other axis, it is possible for a sequelae of health inequalities (risk factors for diseases associated with socio-economic disparities in mortality and morbidity) to persist into old age. As aforementioned, our health system, augmented with AI, is getting better every day — but I think the social side of health can be brought more into the public domain.
There is a condition which disproportionately affects older adults. It has a physical, psychological, social, and economic impact, not only in people with the condition, but also on their carers, families and wider society. There are already 50 million cases worldwide, despite it not being a “normal” part of ageing, and there will be 10 million more diagnoses this year alone. It is dementia.
Put simply, increased societal volunteering could support a social care system currently dangerously failing people with dementia. More precisely (and positively) it could
- Support caregivers, especially informal, many of whom are on the brink of burnout
- Dismantle the public narrative of despair surrounding dementia
Whenever I think about my past patients with most forms of dementia (for it is a hypernym, or umbrella term, for many types of cognitive and subsequent behavioural changes) I am reminded of a quote from a different context — “ to Merry the ascent seemed ageing, a meaningless journey in a hateful dream, going on and on to some dim ending that memory cannot seize”. But this isn’t fair, and is a prime example of what I wish to deconstruct. People living with dementia (and their loving and/or dutiful carers, often with an increasingly complex and emotionally laborious task) are still valid, whole members of society; the system, however, struggles to adequately support them most of the time. I remain convinced that there are, or can be, opportunities for people with dementia to contribute to society should they wish to, and a multitude of ways the public can get involved with providing support where it is so sorely needed, rather than the entirety of the support falling to those in the immediate vicinity.
I have already expressed my unshakable faith in the virtue, care and medicinal value of a hot drink made by someone else or a reassuring arm around one’s shoulders; the simple ministrations of touch alone have been shown to help people with Alzheimer’s disease to make better emotional connections and dampen the symptoms of the disease. Feelings and non-verbal communication (everything, in short, a volunteer is well-stocked to supply) are much more important to people with many types of dementia than to neurotypical people. Kindness, as former Chief Technology Officer of the United States Megan Smith said, is as important as knowledge.
For the last 2 years I have worked as a software developer in software education and health & social care technology. I firmly believe, along with Garry Kasparov, that “the more that people believe in a positive future for technology, the greater chance there is of having one […] we will all choose what the future looks like by our beliefs and our actions.” I have watched with incredulity as health tech has improved, in public and private sectors, hand over fist in the last 5 months. Drs Fiona Kellas and Reuben Jacob argue that the development of digital health technology is expected to lead to lower health costs, personalised treatments and quicker diagnosis, resulting in better outcomes. This is fabulous! But technology is no panacea. Computers and humans are good at fundamentally different things. And we haven’t seen much change or innovation in the human, societal side of things during this time.
Health tech is a booming, unstoppable industry (Henry Marsh again — “money and medicine have always gone together: would could be more precious than health?”). But in the same way Earth technically provides all the resources required to feed the world, and yet 9 million people starve to death each year, I wonder sometimes whether we have everything we need (in a human capacity) to not struggle to provide a robust, healthy, well-cared-for society, and whether a reallocation and re-education of our more human resources would be possible. A paradigmatic shift, as best-selling medical author Atul Gawande suggests, from traditional medical praxis (prolonging life and ensuring survival) to enabling well-being; supporting the reasons one wishes to be alive. As a highly social species, I would argue community engagement is a big part of that.
It is nothing new to suggest we need to change the way our society thinks about the elderly, and encourage mutual respect between all generations. But this is everyone’s responsibility; it is both a privilege and a pleasure to aid someone, knowing your turn may come tomorrow or in ten years’ time. I believe we need an explosion of creativity and humanity in formal and informal volunteering, as attitudes in society rarely convincingly change on such a large scale as the result of a well-placed media campaign or top-down public policy on its own. When navigating change in complex social systems, Peter Stroh advises, people must appreciate that current reality is something that is co-created by every single individual and their actions, not simply something that just “is”. Charles Duhigg, the bestselling author and maestro of habit formation and organisational culture, proclaimed: “There are no organisations without institutional habits. There are only places where they are deliberately designed, and places where they are created without forethought, so often they grow from rivalries or fear.” I think it’s time to rebuild our society’s institutional habits. Work less, volunteer in our communities more.
In giving our time and energy to each other, we will build stronger relationships, protecting our own health (quality of relationships at age fifty is a bigger predictor than cholesterol for health at age eighty, according to neuroscience research) and reinforcing the network that will keep us active and engaged when our turn comes to be the experienced, appreciated, older adults, as well.
Daniel Levitin asked what it would mean for all of us to think of the elderly “as resource rather than burden […] and of ageing as a culmination rather than denouement”. Purposefully, intentionally putting ourselves in situations which involve, rather than sideline, the elderly, and co-creating opportunities which inspire meaningful engagement are key. Part of the narrative which needs to be dismantled around ageing is what Marie de Hennezel curtly calls “the inevitable losses and degradations of the “fourth age” — an age which is systematically associated with illness, ugliness, mental decline, isolation, boredom, and uselessness.”
I will say it loudly and repeatedly for the people at the back: Ageing is not, despite current tendrils of fashionable research, a disease. Dying is perfectly normal — as natural as it is to be born. And there is room for so much life, so much, between growing slightly older and dying. Palliative care, which the uninitiated assume must be unbearable, is humane and humanising; Dr Rachel Clarke, when people ask if her job is depressing, replies that nothing could be further from the truth. “All that is good in human nature,” she says, “courage, compassion, our capacity to love — is here in its most distilled form.”
It is time to spread this throughout society.
Lewis Thomas, the award-winning medical essayist observed “when you are confronted by any complex social system … with things about it that you’re dissatisfied with and anxious to fix, you cannot just step in and set about fixing with much hope of helping. This is one of the sore discouragements of our time […] if you want to fix something you are first obliged to understand […] the whole system.” […] People’s good intentions to improve social systems are often undermined when they apply conventional thinking to chronic, complex social problems. […] Telling stories is a powerful way to make sense of our own experience and the world around us. Stories shape our identity, communicate who we are and what is important to us, and move others to act. They are a primary way of distilling and coding information in memorable form.
— David Peter Stroh, “Systems Thinking for Social Change”
Hui Yin is 96 and moved to the UK in 1951. She lives with her daughter in a small flat in south London. She has a moderate level of Alzheimer’s dementia, and sometimes does not recognise her daughter, Jessie, who works long hours at a tech startup. However, both Jessie and Hui Yin are members of their complex’s neighbourhood association, and Jessie is confident to ask Erica or Janusz, their next door neighbours, to pop in or call Hui Yin to check up on her if Jessie isn’t able to make it home early. The community dementia support association, which offers a safeguarding check every 3 months to review and advise on safety, also runs a support group weekly, where Jessie has met some of her closest friends in the past 3 years, they take turns contributing to the group in different ways. Jessie also carpools with her neighbour Maxime to take Hui Yin for health checkups and vaccinations, along with Maxime’s sister Bea, who has cerebral palsy. Maxime is very grateful for the assistance, and more than happy to drive, and Jessie has undertaken moving & handling training in her spare time to ensure she is able to support Maxime and Bea. Hui Yin thrives in familiar surroundings, so does not want to venture out much, but she is confident to video call her sister and friends, and uses her skills as an expert seamstress to do repairs for people in the neighbourhood association. Supporting someone with dementia can be challenging sometimes, Jessie admits, but the support is invaluable.
Bertrand is an artist, and has been all his life. He officially retired from running his own accountancy company when he was 70, but has since volunteered at two local junior schools following a DBS check to support with art classes, and runs a free art therapy class for all ages in his village — except when he is feeling a bit under the weather, when one of his two deputies takes over for him. He recently fell at home after misjudging the bottom step but there exists a single clinical patient record throughout the NHS and Social Care which was immediately accessible to every clinician who treated him, so he was in and out of hospital with minimal waiting. Once home, after a visit from the Occupational Therapist and the rest of the re-ablement team, a small host of volunteers descended politely upon his living room — a few of them having had falls of their own in the past few years and moving about with no problems now, which buoyed his optimism somewhat — invited by his friend Carol. Together they worked out a rota for helping Bertrand with daily tasks, and little essential things that helped him feel like he was getting back to normal much more quickly. After he recovered his mobility fully, he joined the same network of volunteers, goes out regularly to support his local community and keeps active, and helped advise the local GP clinic on their falls training. He enjoys his solitary, peaceful time gardening and growing vegetables, and occasionally makes a loaf of bread for the village shop.
Bunmi lives in sheltered housing. She does not have any children and her husband died last year following a hospital-acquired infection after a stroke, and until 3 months ago she was still living independently in their house in a small city in the centre of England. She has much more time to herself and is lonely, but feels self-conscious of her English as it is her third language after Yoruba and French. The manager of the sheltered housing is well-intentioned, but busy. Upon venturing to the living room, she sees there is a weekly meeting for all residents to enjoy some treats together and speak about their backgrounds, home countries, and things they miss from home with a group of local young professionals who visit every week for a couple of hours. Each week, the students hunt down a traditional delicacy from one of the countries mentioned, and everyone tries it (if they like). Bunmi learns that these types of groups exist at every sheltered housing group in the country, and that the local Farmer’s Market has been moved closer to the housing group for ease of access. She suggests using their garden to grow vegetables, and having their own stall at the Market to sell them, plus items which the residents have made using their very wide and experienced skills base. She also learns that she can join a local group teaching Yoruba, which she would love to help with, and one of the volunteers shows her how to use her ipad to teach remotely. She has regular calls from her Care Coordinator, but as she is in good health, no action is taken beyond a visit from the Nurse Practitioner every so often to check her vital health readings. The regular contact with people in her community keeps her happy and healthy.
Related reading, all highly accessible:
- Extra Time: 10 Lessons for Living Longer Better (Camilla Cavendish)
- The 100-Year Life: Living and Working in an Age of Longevity (Andrew Scott & Lynda Gratton)
- The Changing Mind: A Neuroscientist’s Guide to Ageing Well (Daniel Levitin)
- The Gerontechnologist’s 2020 AgeTech Market Map (Keren Etkin)
- Contented Dementia (Oliver James)
- The Power of Habit (Charles Duhigg)
- All That Remains: A Life in Death (Sue Black)
- Being Mortal (Atul Gawande)
- The Language of Kindness: A Nurse’s Story (Christie Watson)
- Systems Thinking for Social Change (David Peter Stroh)
- The Remarkable Life of the Skin (Monty Lyman)
- The Digital Doctor: Hope, Hype and Harm at the Dawn of Medicine’s Computer Age (Robert Wachter)
- Ethical Business Practice and Regulation (Christopher Hodges & Ruth Steinholtz)
- Under the Skin: Love Letters to the Body (various authors, Wellcome Collection)
- Give and Take: Why Helping Others Helps Us Succeed (Adam Grant)
- Deep Thinking (Garry Kasparov)
- Admissions: A Life In Brain Surgery (Henry Marsh)
- Your Life in My Hands: A Junior Doctor’s Story (Rachel Clarke)
- The Warmth of the Heart Prevents Your Body from Rusting: Ageing Without Growing Old (Marie de Hennezel)
- Ecological Literacy: Educating Our Children for a Sustainable World (David Orr)