Experiences of loss

With over 200 blogs on D4Dementia now, some of them approaching 7 years old next month, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at loss.

Losing my dad

One of my most popular and shared blogs on D4Dementia is ‘End-of-life care: A very personal story’. I wrote the blog less than two months after my dad had died, and with my emotions still very raw I began the blog by saying:

"Planting up my father’s grave recently, I found my mind wandering back to our last few days with him, painful in so many ways and yet hugely comforting as well. Nothing is more important to me than knowing that we spent all day every day with dad during that time, that we were with him at the very end, and that he had what I would describe as outstanding end-of-life care."

I’ve been back to plant up dad’s grave many times since I wrote that blog, most recently last week to give it some spring colour as we marked what would have been dad’s 92^nd birthday. That was the first time our daughter could really participate in the gardening, and my feelings watching her digging little holes and helping to arrange the plants are something I can’t quite find the words to describe. It’s the closest she will ever get to my dad, which is a huge sadness as I know my dad would have adored being a grandpa and he never got that chance. The emotions may not be as raw now, but dad’s physical absence from our lives means that there will always be a missing piece in our family jigsaw. 

Loss from a distance

Very sadly I’ve had further personal experience of loss recently as my father-in-law passed away in South Africa, just 15 days before the 7th anniversary of my own dad’s passing and having lived and died from the same type of dementia – vascular dementia. Experiencing bereavement from a distance, having not been there to support my in-laws, as well as supporting my other half as he comes to terms with the loss of his dad, is the strangest mix of emotions, and the timing in particular has brought back many memories of my own dad’s passing. 

Distant bereavement means that you don’t have all of the practicalities to attend to, and you don’t feel remotely useful. Life is expected to carry on, and yet it isn’t the same and won’t ever be. Our parents shape our lives and the people we are – losing a figure so influential in your life is like having the rug pulled out from under you, and seven years on from losing my dad I have realised that you can never replace that carpet of stability and wisdom. All you can do is celebrate all that person gave you, and how they’ve helped you to become the individual you are.

Losing a new life

In my work life I draw on the strengths my dad gave me a huge amount, especially when dealing with any topic that involves loss. There is no denying the need to talk about advanced care planning, palliative and end of life care, loss, grief and bereavement, but while my personal experiences positively influence me as a trainer and writer they can also be painful to revisit in many different ways. 

One particular example of recent work, albeit ghost-written so I can’t signpost you to it as the author, was around how life story work can bring up thoughts and the associated feelings of bereavement(s) an older person experienced when they were younger. One of the most powerful ways I illustrated this was by drawing on the experiences of a lady I knew in her 80’s, who had heartbreakingly recalled a miscarriage as a young 20-something woman. 

At the time I never imagined this would resonate with me, but having had a miscarriage at 10 weeks last month I now know that an experience like that changes you. Other women older than me have told me they’ve never forgotten how they felt at the loss of the life they’d had growing inside them, and all I can really say is that in terms of pregnancy it reminded me of the title of a blog I wrote in 2014, ‘A loss of innocence’.

A loss of innocence not because I didn’t know miscarriages can happen, indeed my own mother had one before having me and I know many other women who’ve had miscarriages amongst my circle of family and friends, but because I will never view pregnancy, should it ever happen for us again, in the same way. As I said in my ‘A loss of innocence’ blog:

“Life is not and will never be as it was, and unlike many aspects of our existence this is something that we have no control over.”

For that lady in her 80’s recalling a loss of new life 60 years ago, as real then as the day it happened, is proof that living with loss is a lifetime’s work. Despite dementia taking many of this lady’s memories, it had left that one perfectly intact and able to torment her if the right care and support wasn't in place to help her overcome reliving those experiences whenever she saw a pregnant lady or a baby, having never been able to have children herself.

I’ve come to realise that any loss changes you, and perhaps the most important message about loss is that you don’t forget, and that’s ok. You can’t erase loss from your life however it has touched you; all you can do is find ways to acknowledge your loss and to live with it.

Until next time...

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Life story work – The gift that keeps on giving

One of the loveliest aspects of becoming a parent has been taking our daughter on various trips to meet her extended family. On one such trip we were given a gift, not of a teddy or a baby outfit, but a book with memories of her granddad.

Regular readers of D4Dementia will know that the joy of having our daughter last year was tinged with the sadness that my dad will never meet her. He would have loved being a granddad, and I can only picture in my mind the huge smile and tears of joy and emotion that he would have had as he cuddled her for the first time.

The memory book we were given was something last discussed at my dad's funeral. My cousin promised to look out some photos, and write down memories he knew of from my dad's early life, and I was so touched to find that promise was still remembered over 4 years since we laid my dad to rest.

The book comprises old letters and photographs, alongside my cousin's account of memories from my dad’s childhood and early adulthood. Some details I already knew, but it’s fascinating to read about the places my dad visited, and some of the things he did with his parents and siblings. Dad’s regular routines in his young life, which probably seemed very mundane back then, provide a captivating insight and conjure up pictures in my mind of dad on his motorbike, singing songs around the fire and visiting favourite pubs.

I've written before about the value we had from life story work while my dad was alive, specifically the memory box we made for him. The creation of that box was a wonderful process, displaying it made us very proud, and the discussions sparked by the contents gave joy and pleasure over and over again. It truly was the gift that just kept on giving, and still does to this day, positioned next to my work desk.

For me, that last sentence really gets to the heart of the ‘point’ of life story work. Its value when the person is alive is well documented, but it remains just as valuable, perhaps more so, when the person is no longer with us. Keeping a relative's memory alive, and being able to remember them in happy times, having fun and living their life, gives a very comforting perspective on the loss you feel of your loved one.

The links between life story work and good dementia care are well established. Of particular note is the fact that life story work is hugely important no matter how well you know a person, hence its value for families and professional care staff alike.

If you know a person well, it can help to guide your mutual reminiscence and pride in your loved one’s life and achievements, as well as triggering conversations about favourite sports, music and films etc. If you are a professional who doesn’t know the person so well, life story work is like a window into their world, helping to guide and inform you as you provide care and support for them.

If the person has limited communication skills it enables you to gently prompt conversation. You may also find it beneficial when trying to soothe someone feeling anxious or upset, to lift their mood if they are feeling down, or to bring out the best in the person when they are having a good day and just need a few little prompts to spark off memories they can enjoy.

Life story work is as diverse as the society we live in, and we can all participate - no matter who you are, you have a life story. You might not think it's very exciting, but everyone has something worth sharing and something they can feel proud of. Indeed, one of the best ways to get staff involved in life story work for the people they are supporting is to begin by showcasing their own life stories.

Purely co-incidentally, in my consultancy work with care providers I have various clients who are either embarking upon, or trying to strengthen, life story work within their services at the moment. Different approaches are being utilised, which is precisely what I am encouraging - as in all aspects of dementia care, one-size-fits-all doesn't work.

Templates, guidance and resources are abundant on the internet for anyone looking to begin life story work, but in truth it's not about the format or model you access to help guide yours or someone else's life story work. The most important drivers for creating, maintaining and evolving a life story resource are enthusiasm, inspiration and commitment.

You have to see and believe in the value of life story work or it will simply become a nice 'project' that's started and possibly ended (or abandoned). In reality, life story work is a continuum. The best examples of it are never completed, much like that book we were given about my dad. He is no longer with us to benefit from it himself, but current and future generations can enjoy it and continue to add to it – there are still many blank pages to fill.

Given that this year’s World Alzheimer’s Month - or World Dementia Month as I feel it should be called - is themed around ‘Remember Me’, there seems no more fitting call to action for us all with World Alzheimer’s Day approaching on 21 September than to reflect on the place life story work has in our own world and that of our loves ones. Documenting memories and turning them into vibrant resources that tell their own unique story has a magical quality about it that I can’t put into words – you really just have to try it.

Until next time...

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Holiday season

August in the UK is traditionally seen as the holiday month. Apart from the fact that most families with school-age children are restricted to holidaying at this time of year due to education regulations, there seems to be a mass desire to ‘get away’ in what is meant to be the height of the UK summer.

With this holiday season in mind, I thought it would be apt to explore the idea of holidays, past and present, in the context of people who are living with dementia. Vacations are seen as one of the most positive and enriching aspects of life from childhood to retirement, but how do they fit with the stigmatisation of dementia?

People who are newly diagnosed:

One of the aspects of life that people often feel will have to end once they are diagnosed with dementia is going away on holiday. Holidays are frequently seen as the preserve of the young and people who are healthy and retired, while many people with dementia are subjected to Prescribed Disengagement™ (as described by Kate Swaffer, a lady living with dementia) upon receiving their diagnosis.

Of course we’re all different, and holidays aren’t for everyone. Certainly my dad, a man who never travelled beyond the UK and even then was reluctant to ever go to new places, would have viewed a holiday as an endurance rather than a pleasure, but if you’re a person who enjoys going on holiday a diagnosis of dementia isn’t a reason to stop doing what gives you pleasure for as long as you feel able to continue with that.

The challenges of change when you’re on holiday:

As much as a person with dementia and their loved one(s) might want to go away on holiday, there is often anxiety on both sides about how the vacation will work out. Routine is very important, indeed vital, for many people with dementia, and holidays are naturally a break with that, although depending on the type of holiday you choose you might still be able to keep some familiar routines.

Other concerns are often around travelling arrangements and time spent travelling, differences in living accommodation (layout/comfort/design), the geography of the local area and the availability of familiar foods. Sleep patterns can also be disturbed in unfamiliar environments, and changes in temperature/climate can be problematic.

To help avoid conflicts and upsets, it’s important to understand what each person on the holiday wants out of it and think about where you are going to go very carefully. Choosing a venue that is used to supporting people with dementia and their loved one(s) should help to minimise problems and give you the peace of mind to look forward to your holiday. 

Some suggestions of such venues are here: http://www.dementiaadventure.co.uk/adventures/venues (Please note this link is provided for information, and should not be seen as an endorsement of any particular venue or activity). For additional options, it’s always worth investigating assisted holidays for people with disabilities – it may not seem like an obvious internet search, but some companies that support people with physical disabilities may also have the ability or contacts to support people who are living with dementia.

'Respite' / carer breaks:

There is a perception of ‘respite’ for family carers that is characterised by the person with dementia going into care while their family carer(s) go away for a break. Whilst this may be a model that suits some families perfectly, it is important to recognise that other families want to do things differently. They don’t necessarily want to be separated from their loved one and instead want to be supported to go away as a family.

This is just another example of where a one-size-fits-all approach really doesn’t work, and the individual needs and wishes of families have to be explored and wherever possible supported and facilitated. Many of the holiday venues I’ve listed above do exactly this, and hopefully we’ll see many more examples in the future.

The cost:

Cost is a significant factor for most people when they are looking at taking a holiday, and many of us save for many months or even years to afford to go away. Such saving doesn’t always fit in with the unpredictability of dementia, however, and many people who are diagnosed feel an urgency to fulfil some of their travelling dreams while they are still at the height of their cognitive powers.

Other cost considerations when a person’s dementia is more advanced can be around paying for professional care, or taking a larger than usual family group on holiday so that relatives can take turns in providing more intensive care and support.

In addition, given that dementia care comes under the umbrella of social care, which in the UK is means tested, many people may simply not be able to afford to have a holiday because all of their income/savings have been spent on modifications to their home or professional care fees.

Reminiscing about holidays:

Even if health or financial factors prevent a person with dementia taking a holiday, it doesn’t mean that the many positive aspects associated with holidays have to be abandoned. Reliving past holidays through photographs, family videos, scenic pictures hung on the wall, exotic cuisine or music that is synonymous with vacations gone by can all help to engender a holiday spirit. Think too about textures and sounds - sand, rocks and wave sounds might help to prompt reminiscence about trips to the beach.

A few care homes I’ve visited have gone even further, creating beach ‘installations’ complete with deckchairs, sand and sea pictures, and some are regularly visited by the ice-cream van selling the traditional 99p cone with vanilla ice-cream.

Of course nothing will replace the excitement, discovery or relaxation many of us experience when we go away on holiday, but keeping memories alive when going away is no longer possible can still help to engender some of the feel-good factors associated with holidays.

Until next time...

You can follow me on Twitter: @bethyb1886

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Design challenge

As our population ages, designing environments that are aesthetically pleasing whilst also offering exceptional functionality is one of the key challenges in helping our older generation to enjoy longevity in happiness and comfort.

Where we live, work or socialise has huge implications on our health and wellbeing throughout our lives. Addressing practical considerations whilst making somewhere appealing to our senses isn’t easy, and as we get older we may have physical or mental health problems that impact upon our daily living, and eventually mean we require residential care. So how do you meet the challenge of designing environments for older people that give them the sanctuary and pleasure that we all seek in life?

On my travels around the UK I have visited care homes of all shapes and sizes, some incredibly smart, others very plain, a few quite run down. I’ve been to care homes steeped in history and tucked away down long driveways in the countryside, and big modern purpose-built homes in the heart of towns with schools and rows of semi-detached houses as neighbours. I’ve seen the sort of luxury environments that come with an equally impressive price-tag, and witnessed expensive ‘innovations’ that are either loved by the older people who are meant to use them or dismissed as a waste of time.

Historical properties that have been turned into care homes can offer a wow factor that makes you feel very grand, but design-wise they don’t always provide the most practical accommodation. What they do teach us, however, is that the opportunity to be surrounded by an old-world feel can be very alluring, particularly in the case of people with dementia for whom older properties can offer familiarity in styles, smells and layouts, combined with endless possibilities for reminiscence, that are hugely beneficial.

More modern homes can come with all kinds of innovative facilities, including nail bars, café’s, shops, cinemas, gyms and wi-fi zones. All well intentioned of course, but I wouldn’t want such facilities to replace encouraging residents to go out into the wider community to experience social interaction, travel and new sensations. Ultimately I also wonder if some of these ‘innovations’ are more for staff and visitors than the residents. I vividly remember back in my days of singing in care homes, doing a gig in a nursing home’s cinema and the staff telling me that the residents never went down there and actually didn’t really like the room.

For me, however, there are some elements to creating a desirable environment for an older person that apply to pretty much any type of property. Top of that list would be bringing the natural world into our buildings. Mother nature has given us wonderful light, beautiful plants, birds, wildlife and even weather that can offer our senses something unique all year round. So for me sun rooms, conservatories and large windows are essential when designing buildings for older people, and of course easy access to outdoor spaces that will provide an even more intimate experience of the natural environment and the chance for some al fresco living.

One day you can be sat in a conservatory snoozing in the warm sunshine, the next day you could be listening to the pitter patter of raindrops. You can get closer to weather you wouldn’t necessarily want to go out in either, like watching snow falling on the roof or icicles forming over the windows. Natural light also gives a wonderful feel-good factor that is priceless for wellbeing. The only caveat with regard to lighting is thinking carefully about how light reflects around a room, and how that can impact upon someone with dementia, as I wrote about here.

Of course artificial lighting will always be necessary, but for me you can make an environment cosier if you replace glaring over-head lights (that feel a bit like a hospital) with subtle side lighting that operates on a dimming system, so it can be adjusted if more or less light is required. There are also some wonderful lighting solutions that mimic daylight. I once visited a care home that had a ‘beach’ room, complete with deck chairs, sand and ‘sunshine’ lighting. Alternatively, you can use the warm and soothing effect of a fire to give a room ambience and a home-from-home feeling – in a safe and secure way of course.

Harnessing the power of the natural world can go beyond just lighting however. I’m a big believer in having plants, especially growing fruits and vegetables, indoors – many older people love gardening and by bringing the garden indoors, you can make that an all-year-round activity. Incorporating a greenhouse into a design for a care home or day centre, as part of the main building not as a standalone in the garden, would also potentially fuel activities in another area that is essential to daily living – the kitchen.

How often when you have house guests does everyone end up congregating in the kitchen? In my family it’s the way it has always been. So for me the place where food and drinks are prepared, cooked and eaten is the hub of any home. Clearly you can’t have industrial-style kitchens accessible to residents in a care home, but you can promote independent living by providing adapted kitchens that enable residents and visitors to make their own drinks or snacks.

Indeed assistive products exist for just about every facet of daily living, from eating to bathing and sleeping, but I would argue that profiling beds and assisted bathrooms are still best delivered as discretely as possible to avoid that dreaded ‘hospital’ feel. I still vividly remember how actively a deputy manager at one of dad’s care homes campaigned to persuade the management to install wet rooms, which when we finally got them proved to be a revelation, particularly for residents who were terrified of being hoisted into a bath. Proof that how buildings are designed and equipped is vital in helping with good care provision.

The environment you live in isn’t just about what you can see either. Heating is essential, but carefully regulated systems that offer gentle warmth rather than blasts of heat are in everyone’s best interests. One care home I visited even had a system for pumping fresh air throughout the property – an excellent idea from a health point of view.

Interestingly, on our own search for a home for my dad (which I wrote about here), the only environmental aspect that carried any real weight with us was location. Given dad’s love of the countryside we could never have considered moving him into a home that was in the middle of a town, which proves that like everything in life personalisation is vital.

Ultimately though, I would give the last word on designing buildings for older people to the generation that we are creating them for. They are the real experts, and with an ageing population I am sure that there would be no shortage of willing respondents.

Until next time...

You can follow me on Twitter: @bethyb1886

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Going places

For most of us, travelling is part of our everyday routine. From going to work, looking after our families, shopping or enjoying activities, getting from A to B is just another challenge along the way. Travelling, whether it be close to home or far away, is also associated with pleasure - we do it to see something familiar and nostalgic, or experience the amazing for the first time. You may travel to enjoy a change in climate, experience a different pace of life, tackle an adventure or simply find rest and relaxation.

All of the above are perfectly valid reasons to move yourself from one location to another, and that does not change when someone has dementia. Interestingly my father was never a great traveller - indeed he never left the UK his whole life - and yet when he went into care as a result of his dementia, he became one of the home’s most extensive ‘travellers’, or as it was termed in those days, ‘a wanderer’.

He would walk endlessly along the corridors of his nursing home, and although it kept him fit it brought problems too. Dad was often reluctant to rest during mealtimes, and even when he was persuaded to sit to eat or drink, he would often nag me to ‘get on with it’, so restless was he to keep moving. As he became more unsteady on his feet (partly due to his dementia, but mostly because of the long-standing knee problem that he had), he became prone to falling, resulting in numerous trips to hospital for wounds to be stitched up.

Still he kept walking, undeterred, with an increasingly unbalanced motion until one day, without warning, his walking stopped and never resumed. Efforts were made to restore his mobility, but his knee could no longer support him, and due to his dementia he was unsuitable for knee replacement surgery. So my dad was no longer ‘a wanderer’. Except in my mind he never was.

Wandering suggests aimless moving from place to place without any clear objective, but that is not the case in people with dementia. I have written previously about the need to appreciate, understand and connect with a person who has dementia within the world THEY are living in. It may be a world from their childhood or their years as a youthful adult, it may be a happy place or a sad and worrying place. Wherever it is and whatever the circumstances, the person with dementia may well feel compelled to do certain things, and have great purpose and direction in doing them, however fleeting that may be.

When someone with dementia walks constantly, it may be as a result of seeking, finding, expecting or hoping to see a person, place or object, or to get away from something. It may also be that they feel too hot or too cold in their current environment, they may be looking for the toilet or to make a drink or a meal, they may be bored, wanting to escape from a particular smell or noise, confused about the time of day, feeling energetic or needing to try and walk off a pain or discomfort. You may never discover what their reason is, or the person with dementia may go into great detail about what they are doing. It may prove to be a phase, or a physical problem, like in my father’s case, may end it.

For my dad, much of his walking was harking back to his life as a farmer and a gardener. Walking the fields, rounding up the cattle, sowing crops, ploughing and harvesting. Another man in the care home had also been a farmer, and if anything he walked even more than my dad. A female resident had very different reasons. She had been an executive and travelled extensively abroad for both business and pleasure, with a particular love of dancing the night away on cruise ships. Another lady had been a busy wife and mother all of her life, and was used to being on her feet cleaning, tidying, cooking and running around after her children.

Sometimes it can be important to find ways to persuade someone who walks constantly to take a break. If they lose too much energy they can become prone to falls, and walking constantly at night when they would normally be sleeping can also be dangerous as tiredness develops. Eating and drinking whilst on the move is not advised, especially in people who need more time to chew and swallow their food to avoid choking. Constant walking can also bring those who are doing it into contact with others who may find their movement objectionable.

Building those break times into the walking routine means excluding a physical reason why the person with dementia is walking (ie: needing the toilet), and then finding an occupation for them that either ties in with their reason for walking (if you are able to discover what that is) or involves something that captivates their imagination, thus temporarily overriding their compulsion to walk. Never fall into the trap of viewing their walking as unnecessary though. Re-read the first paragraph of this blog post and for every reason you or I have to travel, remember that in the world of someone with dementia, they may have those exact same reasons too.

Until next time...

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Keeping it relevant

Having enjoyed our summer, or perhaps endured it as many UK readers may prefer to recall our latest disappointing attempt at warm, sunny weather, autumn is now well and truly upon us, and with it many sights and sensations that pose both opportunities but also problems for people with dementia.

Aside from the seasonal onslaught of coughs and colds, which any carer will know can not only create far more confusion in a person with dementia but can also be difficult to treat and may lead to secondary complications, the changes in the weather, the clocks going back in the UK (which means we now have lighter mornings but our evenings begin in late afternoon) and the arrival of some particularly noisy and colourful celebrations all create challenges in dementia care.

On the plus side, crisp mornings and carpets of leaves are wonderfully nostalgic for many of us, and for my father autumn always represented a magical season. The autumn of 2011 has particularly fond memories for us as a family – we had our last outing with dad before his health declined towards the latter part of 2011, and we were fortunate to have the most perfect weather for it. A cold, dry, sunny morning that saw us wrap up against the chill (dad looked a bit like the Michelin man with all his layers on) and venture out of his nursing home to the local woods.

There we pushed dad around in his wheelchair, admiring the trees, smelling the clean, fresh air and listening to the leaves crushing under the wheels and our feet, before sitting outside and having hot tea and treats from the café. It was a very special and happy day that gave us some lovely pictures to cherish and memories that will last forever - proof that autumn is a great time of year to get out and about with your loved ones and enjoy the simple pleasures that life has to offer.

October and November also bring with them Halloween and in the UK, Guy Fawkes night, an annual excuse to light bonfires and let off fireworks. Many care homes mark these events, but there are important issues to consider when bringing scary faces, ghosts and ghouls, explosions and flashing lights into the lives of people who may have a very limited understanding of what is going on around them.

Luckily my father always took everything in his stride, such was his nature, but there were some residents who were terrified by fireworks and would cry uncontrollably, whilst others found the flashing lights very disturbing. In a communal setting, balancing the desire to provide fun for some with the need not to distress or frighten others is difficult, but it is a vital part of respecting and understanding each individual. Halloween, for example, is a phenomena that many older people in the UK have little affection for or interest in, which often contrasts starkly with the experiences of the younger people looking after them who may have grown up trick-or-treating, making masks, costumes and having parties to mark 31 October.

During my time singing in care homes in 2011 (which you can read more about here), I was booked to do Halloween shows, Bonfire night celebrations and Remembrance Day events. Halloween involved a room full of residents most of whom had hats, masks or other costumes on, and all of whom completely lacked engagement with the staff who were dressed in full Halloween regalia – indeed even the Halloween inspired food did not interest the residents, with many of them struggling to understand what the buffet items actually were!

The bonfire gig had a better atmosphere, but some residents were upset by the fireworks whilst others were worried that the bonfire could engulf the building. By far the most successful events were those held to mark Remembrance Day. The residents loved being dressed up, enjoyed the decorations in the home, interacted very well with the staff (who were all in costumes), joined in the singing and flag waving and some even danced.

There is a legitimate argument that says you need to be careful with wartime reminiscence since it can bring back very painful memories of suffering and loss, but my experience was that it brought a very positive blitz-like spirit to the homes I visited, with everyone entertaining each other, smiling, laughing, reminiscing and for people with particularly advanced dementia, interacting in a way that they never normally did.

For me the lesson here is about keeping celebrations relevant. Not celebrating what we as people in our 20’s, 30’s, 40’s or 50’s may be interested in, but what people in their 60’s, 70’s, 80’s, 90’s and beyond remember and identify with in a positive way. Of course what for one person is a cause for celebration is, for another, something to dread (a bit like Christmas, which I will write about nearer the time). Equally there are also many cultural and religious reasons why people may not wish to celebrate certain festivals, but they may be unable to express that due to their dementia, or express it in a way that does not make the source of their discomfort clear.

However, it is often possible to think your way around these problems. For example, I recently read an interesting comment from an Activities Co-ordinator who said that instead of celebrating Halloween with her residents, she would be involving them in lots of harvest-related activities. Back when our parents and grandparents were young, harvest was a very important time in the calendar as they stored up the food that would see them through the winter (before the days of supermarkets!), so celebrating that is a great example of thinking about what older people with dementia would understand and feel motivated to engage with.

Sadly for those caring for people with dementia, this disease does not come with a rule book. One of the most important assets anyone caring for someone with dementia can have is common sense, which is often more likely to be found in the way we look after children or animals than it is when caring for people with dementia. So my advice when planning celebrations – be sensitive, be thoughtful, and most of all remember that people with dementia have very acute feelings and emotions. Our job is to enhance their quality of life, not diminish it.

Until next time...

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The best of your ability

As regular readers of this blog will know, I am very candid about dementia and the experiences my dad had during his 19 years with this disease. It should come as no surprise then that this post is on one of the most sensitive subjects in dementia care, and one that has polarised opinions amongst many people that I know. Indeed the merits or otherwise of it divide clinicians, therapists and relatives alike – everyone searching for the ‘right’ answer.

As human beings most of us are conditioned from a very young age to answer questions 'as is' and as so many application forms tell us in our adult life, ‘To the best of your ability’. So when you are faced with a relative who has dementia and is asking you a particularly sensitive question, what do you do?

This conundrum is one that most people who have a loved one with dementia will face at some point. In that moment you have to decide whether you should answer as the current reality demands, even if you face bringing upset, disappointment, pain and anguish to someone you love very dearly, or whether you should in some way manoeuvre yourself around the subject by either avoiding an answer or answering in a way that does not involve direct facts - in other words, you validate the person's beliefs rather than enforcing their orientation into the current reality.

How you approach this situation depends on some key considerations. Firstly your knowledge of your loved one is vital – there is no greater moment for personalisation than this one. Secondly your understanding of their dementia – if you have been with the person throughout their journey with this disease you will have become accustomed to their reactions (even if sometimes this proves to be completely irrelevant when their dementia surprises you). Thirdly your views - instinct is very important, but it has to be measured against the situation you are in.

Many people wrongly approach this subject from a viewpoint established within their world - reality orientation - completely forgetting that the person with dementia is living their life is a world that is very different, and you should be aiming to support them there, not try to drag them into your reality. This approach is a vital part of reminiscence therapy, something that I wrote about here, and whilst pursuing memories of the past can occasionally lead into difficult enquiries, do not be put off from exploring the benefits reminiscence can have just because you want to avoid any possibility of having to negotiate awkward issues. In my experience those moments come around regardless of whether you are actively reminiscing or not, therefore it is far better to simply be prepared.

When it comes to answering sensitive questions, that timeless ‘To the best of your ability’ phrase says it all. You may have the ability to answer an enquiry on the whereabouts of a parent, partner or sibling who passed away many years ago, but for me the decision on whether you should do that rests on what is in the best interests of your loved one. Will answering this question in the current reality give the person peace and reassurance, or will they be asking the same question repeatedly, and in doing so and hearing the same news every time, just relive that grief-stricken moment over and over again.

Enquiries about deceased relatives may not be the only obstacle you have to overcome either. Equally awkward candid moments can come from questions such as, ‘Am I losing my mind?’ ‘Am I dying?’ ‘Why am I here?’ Answering yes to the first two could again create huge distress, and in answering the last one, telling your relative repeatedly that they have dementia when they may be from a generation that associates that word with very negative images of asylums and appalling treatment, is going to create fear in someone who may not have the ability to articulate that emotional response and feel inwardly wretched as a result.

Pure reality orientation can be a very brutal business, and in dementia care, where gauging the person’s understanding can be such a tricky task, it is a bit like roulette – you just never know how the information will be received, the implications of it, and whether you will be asked to supply it frequently thereafter. These dilemmas do not end with having to deal with difficult questions either. Making a judgement about passing on emotionally-charged information can be similarly challenging.

During my father’s dementia both of his sisters passed away. On each occasion we received the news, we had to make a decision about whether to tell dad. On both occasions we never told him. Whether that was the right decision or not we will never know, but I do know that it saved him unnecessary heartache. 

We had some old sepia photos of dad and his siblings when they were in their early 20’s, and those pictures always brought a positive reaction from dad. Realistically, he remembered his sisters as those vibrant young women with their lives ahead of them. He lived out memories of growing up with them, taking them to the theatre, and being their protective brother. News of their passing would have been, for him, about those young women dying, not the reality of elderly ladies passing away having had families, lived their lives and been happy. So we spoke of his sisters in the context of dad’s world, reminiscing about the things that they had done together, smiling and laughing as we recalled events.

Ultimately no one can tell you whether validation or reality orientation is the right choice for your loved one in any given situation. What I can tell you is that while some people view the validation approach as lying, I never once felt that in sidestepping my father’s questions or not imparting information that I was lying to him. Protecting someone you love from the harsh realities of your world so that they can remain as comfortable as possible in theirs is, in my opinion, never about lying.

Until next time...

You can follow me on Twitter: @bethyb1886

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Remember, remember

The ‘good old days’ are often lovingly joked about as people get older. Wartime stories, tales of food shortages, working conditions, ‘make do and mend’, homes without technology and roads free of congestion can all seem very old-fashioned to my generation and those who are younger. If history is not something that captures your imagination, you may view talking about it with boredom, possibly even contempt, but remembering where we come from becomes increasingly important as we get older, and if someone develops dementia it takes on a vitally therapeutic role.

A commonly recognised characteristic in dementia is an inability to remember current or recent events, whilst having an often perfect recollection of the past. Indeed it can be when a loved one consistently exhibits this behaviour that their family become concerned about the possibility that they are developing dementia. Often the further back in time someone with dementia goes, the stronger their memories become, until they seem to be exclusively living in a time that those around them can struggle to appreciate.

In a society that craves immediacy and recognition, people with dementia are often considered to have ‘lost’ everything by being unable to live in the same moments that we do, but in many respects I view the way someone with dementia lives in the past as a safety mechanism that the disease places around the person. After all, for most people their youth and childhood is a magical time of carefree adventure, excitement, happiness and discovery. Retreating back to the years when you felt cocooned, loved and nurtured is something most of us would like to do when we hit low points in our adult lives, and whether you have dementia or not, or will go on to develop it at some point in your life, the memories of your youth will remain with you forever – in that respect, as in many others, people with dementia are not so very different from those without it.

A common mistake many people make when caring for someone with dementia is trying to persistently drag them into an understanding of the present, rather than learning to embrace the past. Questioning someone with dementia about their day or seeking opinions on current events is often very bewildering for them and frustrating for you. What you should ask yourself is why are you asking them to join your world when it is far easier for you to participate in theirs?

Unless you grew up with the person who has dementia you will never really know the true picture of the world they are living in, but that does not mean you cannot embrace it wholeheartedly. Reminiscence has a major role to play in dementia care in all areas, whether someone is living in their own home, in a care home, in hospital or involved in community based activities. It can stimulate interaction, provide support for someone with dementia through being non-challenging to them, promote comfort by nurturing happy memories, bring families together in a shared activity of talking about the past, help professionals gain a valuable insight into the person that they are caring for, and may even result in someone with dementia surprising those around them with stories that can be insightful, inspiring and very moving.

As a key part of personalisation, reminiscence can take on many forms. For some people it may be about favourite music, films, poetry, novels or art, whilst for others it could be best approached by reliving key sporting moments, fashions, architecture, signage, engineering or customs. Pictures, both personal and public, that evoke memories and illustrate what someone with dementia is thinking about often play a vital role in reminiscence therapy; everything from old seaside photos to domestic scenes can stimulate conversation (see the cards made by 'Many Happy Returns'), alongside newspaper headlines of major events, old magazine covers or photographs of famous faces.

It is generally far easier to promote reminiscence when someone is in their own home, surrounded by many of the things that can help to support their memories. Once that person moves into a care home or is taken into hospital this often changes, leaving them very disorientated, disengaged, and alienated by their surroundings. It does not have to be like that, however. Memories can be supported in EVERY environment, bringing huge benefits to the person with dementia, their families and the professionals caring for them. 

Reminiscence therapy is not an expensive option for health and social care providers; it simply requires an adjustment in thinking that is about supporting people with dementia in their world, rather than expecting them to adapt to ours. Reminiscence should not just be confined to specific ‘activity’ sessions either. It should be everywhere in every moment, and become a partnership between professionals and relatives, especially as family knowledge can often make reminiscence particularly meaningful.

Dementia may rob a person of their present day, but while the past remains alive you have a window into your loved one’s world that can only bring you closer to them. Remember together, explore together and work with what dementia has given, rather than what it has taken away.

Until next time...

You can follow me on Twitter: @bethyb1886

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The sun is out!

Dad and I enjoying the sunshine

There were many occasions during my father’s nine years in three different care homes when I honestly wondered if having dementia was a byword for keeping people in captivity. Day after day, week after week, residents were kept cooped up indoors, which during most of the year was relatively understandable due to the English weather, but on hot summer days people would still be sat inside, in their bedrooms or the lounges, sometimes not even with a window open, eating in stuffy conditions where food can begin to smell very unappetising, watching mindless television, consigned to a life most criminals do not endure.

It strikes me, writing this on a beautiful hot, cloudless English summer day, how torturous it must be to be kept inside, tempted by that blue sky and sunshine, feeling the heat, and being without anyone in the world to help you go and make the most of it. Everyone in those homes was retirement age, a supposedly golden time in your life of relaxation and enjoyment. You do not have to be stuck in an office, factory, shop or restaurant earning your living, you have done your work, now is your time to sit back and soak up the good things in life - why should having dementia change that?

For me that is the key point – dementia is perceived to change everything, and yet the disease is not who the person is, and unless as a result of their dementia the person has developed a phobia of going outdoors, scared perhaps of the uncertainty, unfamiliarity or perceived vastness of it, or has another medical condition that requires them to remain indoors, then there is no reason to keep them inside during perfect summer weather.

Sadly there were so many days, identical to today, where we would be the only family sitting outside with our relative. Carers were generally too busy, too short-staffed or lacking in the confidence needed to utilise the lovely garden, and successfully negotiate any health and safety challenges that might come from bringing residents outside. Even more disappointingly most relatives demonstrated a similar reluctance, even though they saw how much dad enjoyed his long hours of fresh air, sunshine, alfresco dining and napping under his panama hat.

Whilst familiarity and security in their environment is very important for people with dementia, stimulation and reminiscence are too. Most people will have enjoyed outdoor life when they were younger, and those with dementia may have particularly strong memories of summer days free and happy in the sunshine. If someone has led any sort of outdoor life in the past, and shows a willingness or interest in being outside, especially in such glorious weather, denying them that is akin to keeping them a prisoner in a life that they have not chosen and do not deserve.

There was a lady at one of my dad’s homes whose family openly admitted that she had loved the outdoors her whole life, sitting out in all weathers, tending her garden, eating  all her meals outside and having family BBQ’s. They said she would have felt like a ‘caged bird’ to be kept inside, and on the occasions when she was brought out into the garden, listening to her talking about the birds and flowers while lapping up the sunshine made it very clear just how much she loved it. Yet because she could not ask to go outside, both the carers and even her family very rarely took her into the garden. Her dementia effectively consigned her to being a spectator on a life that she must have been longing for but no longer had.

Providing people are well cared for and supervised outside (as they should be wherever they are), it is the most wonderful place to be for the fresh air and sunshine (a lot of people, especially the elderly, are deficient in vitamin D for example), and also for the emotional wellbeing provided by the natural stimulation of birds, plants and wildlife. Many care homes have sensory gardens (that I wrote about here) where scented, tactile plants are growing, and water features provide visual delight and also much needed serenity, calmness and tranquillity.

Another key benefit, and one that is often completely overlooked, is the advantages to eating outside. Fresh air, and even some mild exercise if appropriate, can stimulate appetite. Poor eating and drinking can often be a problem as dementia progresses, but appetising food served outside can help to remedy this. BBQ’s, done safely, can provide wonderful aromas to tempt an otherwise flagging appetite, and even having afternoon tea parties outside can revitalise jaded routines.

Good weather, of which we get precious little in the UK, generally puts most people in a better frame of mind, and this is no different for those who are living with dementia. Not only does their health and wellbeing benefit from some consensual outdoor activities, families and carers can have immense enjoyment from helping to facilitate this. Some of our most special memories, and photos, of my dad during his dementia come from our many hours sat outside with him. These were positive, happy times when the simple beauty of nature could make dad’s dementia an almost distant memory. Nothing really beats exploring the great outdoors with your relative, and if they love it as much as my dad did, you will be so glad that you had that experience together.

Until next time...

You can follow me on Twitter: @bethyb1886

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