Bringing the generations together

There have been few documentaries I’ve enjoyed as much as Channel 4’s ‘Old People’s Home for 4 Year Olds’. For me it ticked every box - it featured some amazing older people (the oldest was 102) and pre-school children (the youngest was 3), it looked at ageing, social care, healthcare, education and child development, it demonstrated innovation combined with scientific rigour, and best of all, it featured some really positive outcomes for the older people and the children involved.

It’s no surprised I loved the programme given the 9 years my dad spent in care homes, the work I do now with older people and those who provide care and support for them, and as a mum to a preschooler, my current immersion in the world of early years education. 

The seed for my enthusiasm for intergenerational work was sown watching my dad light up whenever children visited other residents in his care home. Sadly though, the time many of these children spent in the home was brief and their visits sporadic, so my dad never really had the chance to fully benefit from their presence, unlike the 10 older people featured in Old People’s Home for 4 Year Olds.

In our household, this documentary was particularly timely - in the weeks it aired we were settling our daughter into pre-school. It hasn’t been the easiest transition for her, but I am absolutely certain given her relationship with my mum (who is 79), that had she had the option to go into an early-years educational establishment that meant she shared her pre-school time with older people she would have settled a lot quicker.

The synergies for me don’t end there either. In an attempt to help our daughter settle into pre-school life I made her a memory book, which I’m gradually filling up with photos of all the adventures that we’ve had this year. A memory book for an (almost) 3-year-old - They are for older people (and people living with dementia) right? Wrong! They are amazing at every age and stage of life, and the book has been phenomenal for our daughter. It's given her pages of lovely familiar photos to comfort her and prompt her to talk about her adventures, and it's enabled her teachers to get to know her so much quicker and easier.

In essence, we are actually informally running our own mini intergenerational experiment in our house. My mum lives with us, and although I don't have scientists or experts measuring the effects of this for our daughter and my mum, I can informally categorically say that our daughter’s communication, reading, interactions and skills-set have benefitted so much from extensive time with her Granny, and for my mum, our daughter has physically and mentally challenged her, kept her going and brought so much joy, excitement and unpredictability into her life.

If my mum was living alone she would have had none of this, and would have been much more isolated and potentially lonely, as many of her peers sadly are. Meanwhile for our daughter, with the best will in the world, she would never have had as many books read to her or enjoyed so many other little learning experiences without Granny around every day. 

So, what do we learn from Old People’s Home for 4 Year Olds and my own domestic life? For me it’s that keeping generations in silos is so outdated. I’m not saying that arrangements like those shown on Old People’s Home for 4 Year Olds would work for every older person or indeed every preschooler. Some older people wouldn't want that level of noise, interaction and energy around them. Equally, some preschoolers may prefer to only be with their peers or adults of their parent’s age.

But there needs to be much more choice for everyone who would benefit. Older people who would like to interact with preschoolers could find a new purpose in life, teaching and supporting children to learn, and keeping themselves physically and mentally active into the bargain. Meanwhile preschoolers, who may have busy working parents and live long distances from their own grandparents, could benefit from the patience and time less hurried older people may be able to provide. And that, of course, is to say nothing of the exchange of wisdom that would be happening. 

For those with a less practical, romantic vision who are only interested in hard facts, muse on this. Old People’s Home for 4 Year Olds showed significant physical and mental improvements in the older people over the 3-months of this experiment, all of which could potentially cut the costs associated with their health and care needs. Examples included:

• 102-year-old Sylvia going from being classed as frail at the beginning of the experiment to being no longer classed as frail at the end of the 3-months. Sylvia's cognitive health tests also improved by +3 points.
• 97-year-old Victor improved his depression score by +3.
• 81-year-old Lavinia went from taking 495 steps per day to 1750 later in the experiment, and this despite a fall during the 3-months.

And overall amongst the older participants:

• 5/10 improved their balance.
• 9/10 improved their grip strength (an indicator of overall health).
• Almost half of the volunteers reduced their risk of falling.

The children also showed improvements, including the youngest child, Zach, improving his personal and social interactions and use of language, and Mason improving his sense of what it means to be an older person and developing his ability to nurture and be empathetic. Indeed, such is the impact of this experiment that The ExtraCare Charitable Trust, who run Lark Hill Retirement Village where Old People’s Home for 4 Year Olds was filmed, have committed to a lasting legacy for the project that will see a rolling six week intergenerational activity programme for Lark Hill residents and children from its neighbouring nurseries.

I can see so many positives in intergenerational approaches, and in the 6+ years I’ve done the work I do now I don’t think anything has excited me as much as the potential for bringing the older and younger generations together. The possibilities seem almost endless to my eager brain which is desperate to see new initiatives for the youngest and oldest in our society.

I feel we have become very stale, very staid, in our approaches to supporting people at the polar opposites of the age spectrum and it saddens me. For older people, they don’t necessarily have years to wait to get the care and support that they need, to alleviate their loneliness, to give them purpose and a reason to live the best life that they can. And for our youngest citizens, their brains are alive with possibility and opportunity, just waiting for us to ignite their imagination and feed them with the facts about anything and everything that makes up the world we live in.

For me there is no time to waste. No ifs, no buts. I’m proud that in our own little way through our domestic life that we are doing this as a family, but I would love to hear from any individuals or organisations who want to do intergenerational work like that shown on Old People’s Home for 4 Year Olds at scale. For our older and younger citizens, let’s make this happen!

Until next time...

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The rainbow of dementia

This week will mark what would have been my dad’s 91st birthday, and later on in April, the 6th anniversary of his passing. These milestones have left me reflecting on the last 19 years of dad’s life, how dementia crept into his life and year by year gradually overwhelmed him.

The picture painted of dementia in 2018 seems to have two distinct hues - the brightness of those who are living well, or as well as they can, and the darkness of those nearing the end of their lives, with the multiple physical health problems that I remember only too well. Yet as I think back over those 19 years, it was never as simple as two different hues for my dad.

If anything, it was much more like a rainbow, with the red roughly representing the beginning of my dad’s dementia (which was a gradual onset rather than a distinct change from one day to the next) and the violet representing the end of dad’s life. As the curves change colour, and reduce in size, so my dad’s dementia deteriorated, leaving him with fewer skills and more struggles.

Why a rainbow though you might wonder? It’s bright and cheerful and associated with the freshness and beauty that follows the darkness and rain. I certainly haven’t chosen it because I’m a 100 percent devotee of optimism where dementia is concerned. My positivity has always been tempered by stark memories of times that whilst difficult for me, were undoubtedly far worse for my dad.

I’ve chosen a rainbow because to me it represents balance: The brightness of the colours suggests something special and positive is possible at any point in a person’s dementia, but the reducing curves remind us that the struggles, or the paddling as my friend Kate Swaffer describes it, only becomes more pronounced.

If I think about my dad’s 19 years with dementia - certainly for the majority of the first 10 years - whilst the difficulties gradually increased, my dad had independence, looked after himself reasonably well for maybe five of those years, could read and write for the early years, follow TV programmes and sports, had a fairly good command of language, was able to participate in conversations, and certainly wasn’t slow in articulating his viewpoints. By 2018 standards, he would have made a good Dementia Diarist, a popular DEEP (Dementia Engagement and Empowerment Project) or DAI  (Dementia Alliance International) member, and an engaging public speaker (although my optimism on all of these fronts is tempered by knowing that my dad was a fairly private man by nature, so maybe wouldn’t have wanted to speak publicly).

Those are probably the red, orange and yellow years. By the time we get to the green and blue on the rainbow, dad’s in and out of hospital, and moving from a residential care home to a nursing home. For my dad, the key turning point is his larger stroke, and from that day confusion, communication difficulties, urinary incontinence, changed behaviour and a whole raft of inappropriate interventions (most notably antipsychotic medication) follow. My dad is becoming a much more stereotypical example of what society thinks about when it thinks about a person with dementia.

The indigo and violet years are characterised by further physical decline, with immobility, double incontinence and four years of dysphagia for my dad to cope with before the end of his life. This is the picture most people conjure up when they or a loved one are diagnosed. But as much as the ‘red’ years don’t go on forever, so most people with dementia don’t jump from ‘red’ to ‘violet’ either.

I am a great believer in seeing every face of dementia for what it is: The person living as well as they can in the red to green curves of the rainbow is giving hope to every single individual who has just been diagnosed or will be in the future. Without that hope, everyone just fast forwards to a picture of what 'violet' looks like, and that is only going to lead to more rapid deterioration with the added pain of potentially severe depression, hopelessness and even suicidal thoughts.

The person living in the blue to violet curves is never going to offer the same type of hope. They are coping with a greater array of physical health problems and are increasingly reliant on others for their care and support. Our perception is that brightness is fading, but what we learn from these individuals about the human spirit is perhaps even greater than their more articulate peers. Moreover, the qualities we find in ourselves from becoming caregivers represents invaluable, albeit sometimes very painful, life lessons.

Aside from my dad and the people I’ve known personally who are affected by dementia, I’ve met so many other individuals through my professional work who are living with dementia, coping (or not coping, and yes, sometimes suffering) and every single person has taught me something. As my dad took his last breaths I learnt about peaceful serenity. As I see a person living with dementia giving a conference speech, I learn about their strength to stand there and tell their story (often without notes, something I cannot do). As I see a person living with dementia in a care home trying to regain mobility after a broken hip, I learn about determination. As I read a book, a blog, or a social media post from a person with dementia who is laying bare their personal experiences, I learn more about living with dementia than I ever could from a textbook. As I see someone managing a few mouthfuls of food, and breaking out into a satisfied smile that they’ve outwitted dysphagia for one mealtime, I see a will to go on living despite the obvious struggles.

When my dad's life started to change, which in hindsight was when he began developing dementia, I had no idea we had 19 years ahead of us. As every year went by, we just tried to make the most of whatever situation we found ourselves in and give dad the best quality of life possible. I certainly don’t think we always managed that, and I dearly wish I’d known then what I know now.

Did my dad live well? Yes sometimes. Did he suffer? Yes sometimes. But when I reflect now, the fact that it’s a rainbow I gravitate towards, feeling an affinity with the brightness rather than the reducing curves, reminds me that although dad is gone we lived those 19 years together, and for all their ups and downs there was a beauty in the love that bound us together and that shines on.

Until next time...

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Do something new... and learn something new!

Welcome to the fourth of my seven blog posts for UK Dementia Awareness Week 2015.

This year's Dementia Awareness Week centres around the theme of doing something new for people with dementia, under the mantra that ‘Life doesn’t have to end when dementia begins’. For many people living with dementia in care homes, however, a lack of opportunities to have meaningful occupation and activity, or even just enjoy the simple pleasures that many of us take for granted, can lead to life feeling like it really has ended.

Over this Dementia Awareness Week (DAW2015) I want to look at some of the positive things relatives and staff can do to enhance the lived experience of people with dementia in care homes. They may be new things, or they may be old favourites, but they all share in the ability to turn a boring day into something a little bit more special. 

Day 4: Learning

Very few people associate education with people who live in care homes. The common misconception is that individuals who move into care homes have learnt all they are going to learn and are either incapable, or will soon become incapable, of learning anything new. If you ever wanted a greater example of how to debunk these myths, however, then look no further than this inspiring film from ‘Learning for the Fourth Age’.

Learning is both possible, and in fact highly recommended for people at any age and stage of life. For people who are living with dementia it can help with self-esteem, mental agility, confidence, independence and offer a really tangible opportunity to enhance wellbeing. Learning is also a great way to bring families together, with education bridging gaps between generations and enabling younger relatives to teach their older loved ones new skills that they have already mastered (perhaps with technology, a topic I wrote about for yesterday’s blog), and indeed vice versa – never underestimate the things you can learn from spending time with older people.

Education in care homes really can be anything from gardening to pottery, painting to learning a musical instrument, reading books to learning songs or even a new language – the only limit is your imagination and the interests the person with dementia, their family and care workers have. If your budget allows you may consider bringing in external tutors who can provide specialist learning support, but don’t ignore the often untapped talent that lies within the many individuals who make up a care home. Residents, staff and family groups are often very diverse in their skillset and interests, including cultural diversity and the ability to teach skills learnt in distant childhood lands that you would otherwise have to travel many miles to experience.

Whether you decide to pursue group learning or one-to-one classes, just make sure you never forget the power of people with dementia as educators in their own right – with rich life histories, you might just be surprised what people remember how to do and could teach you!

More information, tips and advice on learning can be found in my Huffington Post blog:

Never stop learning: http://www.huffingtonpost.co.uk/beth-britton/never-stop-learning_b_5723358.html

Next post on 21 May 2015.
Until then...

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Reablement for people with dementia

As we approach Easter, a time associated with rebirth, new life, possibility and opportunity, I have found myself thinking about how this correlates with the experience of living with dementia. Historically, a diagnosis of dementia has been seen as a death sentence to endure and suffer, but since that doesn’t tally with how I look back on the years I had with my dad during his dementia, I have become increasingly interested in the concept of reablement.

Reablement is generally associated with helping a person to regain the ability to look after themselves following an illness or injury. You are most likely to see services dedicated to reablement for people who are recovering from trauma (I distinctly remember the wonderfully holistic package of reablement given to my half-brother after he had a road traffic accident), or a stroke, and possibly even for people who are recovering from mental illness or addiction.

I would frame reablement as help to complete essential tasks of daily living, support to pursue hobbies and interests that are mentally and/or physically challenging, and opportunities to grow and develop. For my half-brother, I recall a residential reablement centre he went to after being discharged from hospital where he was supported to look after himself (cooking, laundry, personal care etc), return to participating in the things he enjoyed prior to his accident (hobbies and activities that were important to him), learn new skills, and plan for the future to help him prepare for living independently, getting out and about and returning to employment. He received physiotherapy, occupational therapy, counselling and there were wider family support services.

All of which begs the question, why aren’t the principles of reablement more closely associated with dementia? To put it bluntly, since dementia is a terminal disease, I suspect people with dementia are seen as being unlikely to benefit from a service that supports and encourages independence and autonomy, when traditionally dementia is associated with a degeneration into complete dependence and a loss of voice and identity.

Obviously I’m not questioning the terminal nature of dementia; my dad had vascular dementia on his death certificate. Nor am I suggesting that as dementia progresses a person doesn’t become more dependent -  I know from my dad’s experience that he became totally dependent on 24/7 care, hence why he was in a specialist dementia nursing home for over 8 years.

But behind all of this there are some key variables: 

1.      There is no set pathway for deterioration, everyone experiences this differently and in different time scales. I don’t really support the categorisations of early, middle and late stage dementia – to me these junctures are too specific and not reflective of the fluctuations in the day-to-day life of a person with dementia. Surely aiming to help a person to have the highest level of functioning for as long as possible can only be a good thing?

2.      No matter how advanced a person’s dementia is, there are opportunities for participation in everyday life, it's just that we often don't see these or have time to help them happen. Key examples from my personal experiences are my dad occasionally wanting to take the spoon and feed himself his pureed meal in the last year of his life, or finishing a song in perfect time to the music when he otherwise had virtually no speech. These achievements came about through perseverance, patience and offering encouragement.

3.      We are never going to know what people with dementia are truly capable of if we don’t actually put in the services, like we have for people who experience trauma or stroke, to actually see what is possible. How do we know reablement services aren't just as effective as any of the drugs we currently have , or might have in the future, to treat symptoms or slow down the progression of dementia? Admittedly there have been a few areas of the UK offering reablement to people with dementia, but it certainly isn’t a mainstream service.

Sadly my dad never really experienced any form of official reablement. At the point he was diagnosed with vascular dementia, following ten years of mini strokes and then one much larger stroke, his quality of life and abilities had deteriorated very rapidly. As a family we had been trying to support him but we really didn’t understand what was happening to him, and the health and social care professionals in his life hadn’t been proactive enough to grasp the bull by the horns, diagnose, explain and, crucially, offer dad and us the support we needed.

 

Enabling dad to have maximum independence, occupation and enjoyment in life was pretty much impossible once he was confined to hospital and then moved into the first of the three care homes he would go on to spend the last nine years of his life in. We had some small victories over the years, largely stumbled upon through pure chance – examples include discovering the power of music therapy, the joy of food and eating and the wonderment of connecting with the natural world – but nothing that really fits how I would interpret reablement if I had the chance to live those 19 years of my dad’s dementia with him again.

 

My top tips for reablement success for a person with dementia would be:

1.      Offer reablement in the person’s own home - the type of residential centre my half-brother went to isn't going to be the right model for the majority of people with dementia given the confusion and anxiety a new environment could cause. Equally hospitals, however dementia-friendly they are (and the one my dad was in really wasn’t), don’t offer the familiarity, calmness, opportunities for exploration and expression or the personal touch of home.

2.      Involve a multidisciplinary team of professionals, most notably people who are from the allied health professions, all of whom should be specifically trained in dementia and all of whom should take their lead from the person with dementia. Remember, professionals can learn from the person as well as imparting their own knowledge.

3.      Think out of the box. Is there technology that can help? What about the latest guidance on dementia friendly environments, has this been translated to the person’s home? Away from health/social care, are there individuals within the local community who can provide pastoral or occupational support, visiting or enabling the person to get out and about to enjoy hobbies/activities? Going further, can the person be enabled to get involved in community work/volunteering/awareness raising/public speaking etc – there are some fantastic peer support and mentoring services than can encourage such activity for people who feel it is right for them.

4.      Belief in the possibilities of reablement both for the person with dementia and those who are supporting them – be they family members, friends, neighbours or health and social care professionals – is vital. This means moving away from the historical or traditional views of dementia and seeing the exciting possibilities of reablement and how it feeds into living well.

Alongside these tips, do take a look at this page on the SCIE website: http://www.scie.org.uk/publications/guides/guide49/dementia.asp

 

Interestingly from the perspective of the timely diagnosis agenda, reablement fits perfectly with the idea of catching symptoms early and maximising the person’s potential. Currently diagnosis is often just a label and a prescription – reablement offers something more tangible, providing strategies and opportunities to grow into that diagnosis and live well with it. It should be at the heart of good post-diagnostic support, and if it were, those of us who are doubtful of the merits of diagnosing earlier and earlier might see more justification for it if an accurate diagnosis can be made.

 

Reablement isn’t about giving people with dementia or their families false hope or denying the reality that dementia is still a terminal disease. What reablement offers is the chance to make the best of what we have and do something practical to underpin the message of living well with dementia. Without reablement, I think that there is a very real risk that we give up on people with dementia far too easily.

 

Until next time...

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Does the world really stop?

There is a prevailing view that when someone is told that they have dementia, everything in their life must stop. If they were working or studying that must stop. They must stop driving. They stop being spoken to and start being spoken about. They stop being given tasks to do, or even being allowed to complete simple tasks that they feel comfortable tackling.

Any deviation from this is considered to be a lack of compliance, but since when did people with dementia have to become compliant? Being told you have a terminal illness is likely to make most people want to become as incompliant as possible. A diagnosis of many other terminal illnesses is often associated with the formation of a bucket list, a compendium of all the things someone wants to achieve, all the places they want to visit and all the people they want to meet. Not with dementia though.

We expect people with dementia to just crawl home and stay there until potentially a medical emergency brings them into contact with their local hospital. Then they will encounter the giant beast that is healthcare, followed by social care, followed by huge confusion and frustration for a person who is likely to already be hugely confused and frustrated due to their dementia.

So is this mismanagement on a grand scale or just a fact of life? Personally I don’t think this reality is right for anyone. No one is likely to live well with dementia if their life is reduced to a model of isolated dependence, where joy and happiness is in short supply and irritation and depression are the daily norm.

I’ve written previously about the need for everyone with dementia to be given the opportunity to achieve, and that can be achievement at every stage of dementia. You may associate achievement with hitting huge milestones and pushing yourself to extremes – for someone with dementia it may be something as simple as making a cup of tea or buttering some bread, but it’s achievement, it is an element of self-sustainability and it’s priceless.

I lost count of the young doctors who saw my dad during his 19 years with dementia and questioned the point of treating a man who a) had a terminal disease, b) was immobile (as dad was for many years), c) doubly incontinent, d) had a swallowing problem (for the last four years of his life) and e) apparently in their narrow-minded judgement, had no quality of life whatsoever.

He did, in fact, have quality of life, just not what most people with limited understanding of dementia perceive to be quality of life. He enjoyed his food and had an amazing appetite. He loved listening to music and would sing along. He rested peacefully and relaxed with simple pleasures. He looked forward to going outside and would snooze in the sun under his panama hat. He was emotionally alert and showed that when he saw the people he cared about. He was loved and showed love to those he cared for. All of these things represent quality of life.

My dad had that, however, in spite of the systems that try to wrench this away from people with dementia. Systems that want to dehumanise and disempower people with dementia, pretty much from the earliest point in their dementia to their last breaths at the end of their life. My dad had quality of life because he had a family. How many people don’t have an actively involved family or indeed any family at all? Relatives have been known to run for the hills when they hear that a member of their family had developed dementia (some fearing that it is, in fact, contagious).

My dad’s world could easily have stopped. I’m sure on some days it did, no one in our family would claim to be a superman or woman – none of us were capable of removing every negative feeling and experience from the life of my dad, however much we tried. That is, however, the point: we did at least try.

For us the world didn’t stop, it kept on turning. Yes it was different, but life doesn’t stand still. It can happen around a person with dementia, or we can all make a conscious decision to ensure that person is part of their world. Indeed, to give someone the best chance of living well with dementia nothing needs to ever really stop. Yes they may not be able to carry on with a particular type of work or hobby, but there is no reason not to try something else that they enjoy, or indeed something new.

If paid employment is out of the question, volunteer, campaign and spread the word. Talk about your experiences; I guarantee that there will be people who want to hear about them – I definitely do. Driving a car may not be possible, but look into every other form of transport and make sure that you are getting out and about regularly. Tasks may need some supervision occasionally, but as observers we should never jump in to ‘correct’ unless it is absolutely necessary to prevent harm. It’s ok to do things ‘wrong’ – it’s better to have tried, experimented and come up with something unique, than to have sat back and decided that you can never do anything ever again and it’s time to just give up and admit dementia has won.

Throughout history the most innovative people have often been incompliant – the mainstream wasn’t for them, and they set about putting their own mark on the world. In many ways, I’m hugely incompliant and actually proud of it. Facing up to a future with dementia may be terrifying, but let it also be liberating. Make your bucket list and don’t let your world stop – it’s far harder to start again than it is to just keep going.

Until next time...

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