Coronavirus and being isolated from a loved one

Last month I wrote about the coronavirus pandemic and answered two questions families supporting a loved one are grappling with: How do we hand-wash more and how do we self-isolate?

For families who aren’t in the same household, however, they are living through many weeks, which may potentially become months, without physically seeing their loved ones. If a family member is in a care home that isolation period may be the longest any of us experience, since care homes are - as we have seen - incredibly vulnerable to coronavirus outbreaks. 

Indeed, the impact of coronavirus on care homes and the devastation being wreaked in terms of illness and death amongst residents (as well as the huge risks many staff are taking if they don’t have adequate personal protective equipment) is on a scale that even on the current estimations is truly horrific.

Fears for a loved one in a care home

For numerous families, reading these stories will only magnify their own immense fears for the health of their loved ones in care homes, and many will feel utterly powerless and dreading every ring on their phone. Although we never lived through anything like this with my dad, there is no doubt that I know the fear of illness well, since dad was hospitalised numerous times in the last nine years of his life. 

For us, the dreaded phone calls would often come in the middle of the night and would usually be because dad had a worsening chest or bladder infection. Time after time dad pulled through until the last, catastrophic bout of pneumonia that eventually overwhelmed him.

With care homes currently in strict lockdowns, the ban on visiting has both emotional and practical ramifications. The longest I ever went without seeing my dad during his nine years in care homes would have been around three weeks when one of his care homes had a norovirus outbreak, and it was characterised by constant worry.

The pain of separation 

Fast forward to 2020, and most families are faced with being apart for far longer. The pain this separation will be causing many people was something I thought about whilst reflecting on my dad’s 93rd birthday earlier this month. We were lucky to be able to spend every birthday with my dad, but so many people will be unable to do that during this pandemic. 

The stark feeling facing many families will be the anxiety that it could be their loved one’s last birthday and they won’t have those memories of being together. Whilst this may sound trivial to some in the face of the threat of coronavirus, the loss of the celebration of these milestones together only enforces the painful separation. And of course if a loved one is approaching the end of their life and you aren’t able to see them, the effect on grieving families is immense. We can buy many things and do a huge amount as 21st century citizens, but we cannot buy time, nor replace the physical touch of hand in hand or cheek on cheek.

Ways to keep in touch with your loved one when you are apart

Much has been said about the power of the digital world to bridge the yawning chasm many families are feeling, and it is undoubtedly the best option for at least seeing each other’s faces and hearing each other’s voices through mediums like Skype, FaceTime and Zoom.

More traditional options like sending letters, cards and photographs might seem less appealing, but for the older generation and particularly if someone’s dementia is advancing, these might be more understandable and recognisable than digital options. 

Bear in mind too that as someone’s dementia progresses, a phone call may be incredibly difficult for them to contribute to as it contains none of the visual clues, like mouth movements and body language, that can help the person to understand what you are staying. And of course they cannot see you, so simply saying who you are may not be enough of a reminder.

Practical things you can do for your loved one

If you are wanting to do something more for your loved one than just keeping in touch, these would be my top three suggestions:

• Make a life story resource. It may be that one of your lockdown projects is to sort through old photographs or memorabilia at home, or do some family tree research. Commit to creating a life story resource from items you may have at home, or things you can find online about your loved one’s life. You could turn these items (using copies of any precious originals) into a life story book, box, collage for a wall or other resource. You could be more creative too, as this care worker was when she had a cushion created for a gentleman who was missing his late wife. And don’t wait until you see your loved one to give them your life story gifts - research an affordable door-to-door courier (examples here) and make it a lovely surprise for your relative to open during this lockdown.

• Make a playlist. If you know the music your loved one enjoys, begin a playlist for them. If you are unsure of some details, liaise with staff and make it a three-way remote project between yourself, your loved one and the care worker(s) supporting them.

• Send a food parcel, or package up favourite cosmetics, clothing, books, magazines, cd’s, dvd’s, hobby materials or other things your loved one will enjoy receiving. There are lots of things you can order online and have them delivered straight to your loved one, or get some extra items with your grocery shop, package them up and send them via a door-to-door courier. Again, this will make a lovely surprise.

All of these ideas, of course, won’t ever replace that personal contact, but in the face of the current restrictions I hope families will find comfort in being able to do something practical to feel more useful and to ease those long days until they meet again.

Next month I will continue to look at the issues raised by the coronavirus pandemic. Until then:

• Keep safe
• Stay at home
• Keep your distance from others
• Look after yourselves
• And stay well.

You can follow me on Twitter: @bethyb1886
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Resolve to ask people with dementia what THEY want

With over 200 blogs on D4Dementia, some of them now 7 years old, 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. For my last blog of 2019, I want to look at how we listen to and respect the viewpoints of people with dementia.

In July 2015, I wrote a blog post entitled: 'Why don't we listen to people with dementia?'. In that blog I said:

“If we are ever to move beyond stigma and discrimination and towards a truly world-class model of support and care for people with dementia, then giving people with dementia a voice and listening to what they have to say really is the only place to start.”

It was, therefore, with some amazement that I read a report about the UK Dementia Congress debate last month entitled, ‘Environmental lies in care homes play an important role in delivering person centred care’. The Journal of Dementia Care said the following about the debate:

“When can you lie to a care home resident? It was a hotly contested issue at UKDC last week, where delegates debated the use of “environmental lies” in care settings, such as fake windows with painted views, “bus stops” to which no bus ever comes, and disguised doors. “As a person with dementia when I go into a care home I do not want them to lie, either in the environment they create or in their actions,” said Keith Oliver, who opposed the motion that deceptive décor can play an important role in delivering person-centred care. It was an impassioned performance from Oliver, who has young onset dementia, which helped sway the audience from favouring environmental lies at the start of the debate to being firmly against by the end. But independent nurse consultant Lynne Phair, fought valiantly in favour of the motion and said there could be a therapeutic value in meeting the person with dementia in their own reality. Phair added: “Environmental lies must be used wisely.” But there was a resounding victory for the motion's opposers – also including Professor Graham Stokes – who had 54% of the audience behind them by the end (compared with 33% at start), while the proposers – also including family member Catherine Naj Dyke - had 37% on their side by the end (40% at the beginning).”

For me, the quote from Keith Oliver says it all, and frankly not only would I have supported Keith had I been at the debate but I wouldn’t have had the temerity to argue against him (which would make me a useless debater!) even if I felt fake environments were a good idea (which I don’t) for one simple reason - He is living with dementia, I am not. My natural standpoint is to show deference to any person living with dementia, putting aside my personal viewpoints and remembering what my dad always told me: “Respect your elders and betters.”

Keith’s views, I suspect, are echoed by many people living with dementia, including the numerous individuals who are living with dementia in care homes and largely don’t have a voice. From my experiences with my dad, I know he found the fake letterbox, door knocker and doorknob put onto his care home bedroom door utterly baffling, and why wouldn’t you? They didn’t function as these items normally would, and they seemed to have been added purely for decoration following a dementia consultant being engaged to ‘improve’ the environment. Sadly, what this consultant didn’t factor in was the amount of confusion and frustration such changes would cause.

In my work with care homes, I have never advocated for the implementation of fake environments. I have always felt, and seen this borne out numerous times, that if the care and support is good enough, if staff really understand dementia and are well trained and supported in their work, then the needs of residents living with dementia will not only be met but continually exceeded.

The money spent on fake environments, which is often considerable, is always likely to be better spent investing in staff. It is people that make the difference in dementia care, nothing is more important than the human element, and to reinforce this I go back to the point I made at the National Care Forum (NCF) Managers Conference last month, and which was reported on by the NCF's Nathan Jones: 

“A hotel environment is just window dressing if the care is not there.”

The type of environmental changes I support are based on bringing the person’s life story alive. I love to see environmental life story work that enables people to be reminded of things in their lives that make them happy or proud. After all, most of us like being surrounded by family photos, mementoes from holidays, and career, hobby, sporting or musical passions or achievements. Most people fill their homes with items that are personal to them, and that is the most apt way to create a supportive environment for a person living with dementia. Even if it’s only within their own bedroom in a care home it is better than the stark, plain, hospital-like rooms that so many people with dementia exist in within care homes, and certainly better than deliberately introducing items or decorations that depict something utterly fake. 

As I said in my September 2016 blog, 'Life story work - The gift that keeps on giving':

“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.”

So, if you run a care home and are planning some environmental changes in 2020 (or beyond), resolve to: Find out what people living with dementia actually want (ask them! And if the people you support aren't able to help, contact organisations like DEEP or Dementia Alliance International), prioritise life story work for anyone you support who wants to participate in that, and always keep it real, not fake.

Thank you for all your support in 2019. Until 2020...

You can follow me on Twitter: @bethyb1886
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Myths and lessons

With over 200 blogs on D4Dementia, some of them now 7 years old, 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 awareness.

My first D4Dementia World Alzheimer’s Month blog in September 2012 was entitled, ‘So how much do you know about dementia?’ In the blog, which remains one of my most popular to date, I sought to bust myths about dementia and talk about what dementia had taught me. The myth-busting is particularly interesting to look back on as the blog was written before Dementia Friends - one of the key initiatives to raise awareness of dementia - was launched. Some of the messages from that blog went on to be incorporated into Dementia Friends and have become mainstream knowledge, but they are still worth repeating:

• Dementia is not a normal part of ageing (types of dementia are caused by diseases of the brain). 
• There is so much more to dementia than just forgetting things (dementia symptoms are multi-faceted, vary hugely and are individual to each person).
• Dementia doesn't just happen when people get older (young onset dementia, defined as dementia in someone under 65, is increasing and dementia can even occur in children, although this is rare).
• People with dementia are still people, not a disease. 
• Dementia is not contagious. 
• Those living with dementia still want to lead active and full lives and not be locked away and forgotten about (most people want to be cared for at home, not in communal establishments).
• People with dementia can make a positive contribution to society if supported to do so.
• You can live well, or live as well as possible, with dementia.

I followed the myth-busting with some personal reflections about what my dad’s dementia had taught me:

• To appreciate the smallest things in life, since they become extremely precious (a simple “Hello” from my dad in his final few months brought a massive smile to my face). 
• To make the most of every day (good days and bad days become an ever-present feature with dementia, and when the good ones come along you want to make the most of them). 
• To never give up (yes there isn’t a cure yet, but there is a lot you can do to make someone’s life with dementia a more positive experience than it would have been ten, twenty or thirty years ago). 
• Finally, in my case, to share our experiences with the world (everything my dad went through is there to inform, educate and influence others. He would have wanted to make a real and lasting difference, and hopefully through me that will be his legacy).

Despite there being seven years between writing that 2012 blog and today, and a multitude of other experiences gained primarily through my work but also from people I’ve known personally, I cannot better those last four points - they sum up so much of what I talk about regularly. 

Appreciating the smallest things in life feeds into the principle of taking notice, one of the Five Ways to Wellbeing that have been pioneered by the New Economics Foundation and are widely recognised as key aspects of supporting good mental health. In 2012 I gave the example of my dad saying a simple “Hello” to me in the last months of his life, but I’ve since heard about even more precious, seemingly ‘small’ moments, not least a lady whose husband (who was living with dementia) told her he loved her - quite unexpectedly as he wasn’t given for such proclamations she said - just hours before a major stroke left him unable to speak another word for the rest of his life.

Making the most of every day was, in my dad’s case, particularly notable when we were supporting him in things that reflected the happiest memories from his life. Examples of that included listening (and singing) to music he loved, looking at books he’d enjoyed in his life (including reading a poetry book about love in the last days of his life), enjoying favourite foods (roast beef), or talking about some of his favourite memories of his life and looking at items that reflected those, which in my dad’s case were his notable achievements as a farmer. We, of course, knew my dad’s life story and so were able to facilitate all of this interaction, but for professionals currently supporting a person that they don’t know as well I would wholeheartedly recommend life story work – it really is the gift that keeps on giving.

Never giving up for me means being really person and relationship centred in your approach to supporting the person. If you spend a lot of time focusing on the big picture of dementia (the minimal treatments and lack of a cure) and the stark reality of dementia as a progressive and terminal disease, you can very quickly feel like giving up. Whereas if you get back to thinking about the person, what might make their life happier or more comfortable right now, you can find a sense of positivity and achievement. A classic example of this comes from a gentleman I met who every Friday would bring 3 roses to his wife in her care home. I was curious as to the significance of the day and the number of roses so I asked him. He said the roses (which always had to be different colours) represented their 3 children, all of whom had been born on a Friday. He said his wife couldn’t remember their names now, so the roses (roses were his wife’s favourite flower) had become her way of feeling close to her children (two of whom now lived abroad). She would hold, caress and study each of the roses and they’d have conversations about ‘red’ rose, ‘pink’ rose and ‘yellow’ rose, with him weaving in details about their children’s lives to make the conversation more meaningful.

Sharing experiences remains one of my greatest passions. Telling my dad’s story and the stories of the many other people I’ve met who are ageing and/or living with dementia is the most powerful way I’ve found in 7+ years to illustrate the health and care experiences individuals and families are having. I’ve seen first-hand how illuminating and inspiring personal experiences are for professionals involved in care and support, and I personally believe it should be mandatory for all dementia training to include these experiences. For this World Alzheimer’s Month, if you’re looking for some inspiration beyond this blog hunt down one of the many blogs, books, films or recordings that people with dementia have made or contributed to and you’ll see why nothing beats hearing from those actually LIVING with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886
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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...

You can follow me on Twitter: @bethyb1886
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Supporting LGBT people with dementia

Almost a year ago (September 2017) saw the launch of the Dementia Action Alliance’s (DAA) ‘From Seldom Heard to Seen and Heard’ Campaign. The campaign focuses on people living with dementia and their families from six communities who are often marginalised from services and support: Lesbian, Gay, Bisexual and Transgender + (LGBT), Black, Asian and Minority Ethnic (BAME), Young onset dementia, The prison population, People living in rural communities and People with learning disabilities.

I’m a national member of the DAA, and proud to have worked with the team in developing this campaign, mostly by utilizing my extensive knowledge and experience of working with people who have a learning disability and dementia. I wrote about BAME communities in my October 2017 blog, my March 2018 blog was all about rural communities, and last month I told Kathy’s story, about living with a learning disability and dementia.

For this post, I want to think about the challenges for people with dementia who are lesbian, gay, bisexual or transgender (LGBT+). Of the six groups the DAA campaign focuses on, LGBT people with dementia are the most hidden of all in my opinion and arguably the most stigmatised, coping with societal attitudes towards their age, sexuality and dementia at the same time.

Many older lesbian, gay, bisexual or transgender people have led a life that's been all about hiding away, characterised by fear and intimidation. Historically as a nation we haven’t been welcoming to LGBT people with layer upon layer of discrimination and ostracisation, not to mention violence and criminalisation. Indeed, homosexuality was illegal in the UK until 1967 and was classified as a mental illness until 1973. 

Since then, the immense changes that have happened legally and societally will have brought a huge amount of relief and joy for many LGBT people, but it's important that my generation - who see PRIDE marches and same-sex couples marrying - don't forget the struggles that remain vivid in the minds of some LGBT people who are now ageing. Examples like this, of a care provider celebrating with their own PRIDE event are still few and far between. No aged-care client that I work with has done anything like this to my knowledge, and I know from quizzing learners at my training sessions about how we meet the needs of people from different communities, including LGBT, that I usually get blank looks.

One of the big motivators for writing this blog came from what a learner said to me a few weeks ago, echoing others in the past: “We don’t have anyone living in our care home who’s gay!” It’s an interesting assertion that many staff struggle to quantify since they have to admit that they don’t know the full life history of every person they provide care and support for, and that which they do know may be the ‘acceptable’ front that so many LGBT people in their 70’s, 80’s and 90’s have cultured from a young age to protect themselves from the worse of what society would have thrown at them over their lifetimes.

With the development of dementia, however, that carefully protected private life can become extremely vulnerable to intrusion in so many different ways. Contact with health and social care services may be something that a lesbian, gay, bi or trans person actively avoids due to fears from their earlier life of medical professionals who tried to ‘cure’ them through ‘conversion’ therapy, much of which would have come under the umbrella of old-style psychiatric services, and of course modern-day psychiatry is a key part of dementia care now.

If an LGBT person has a partner, that person may be assumed to be a relative or friend rather than a partner simply because they are the same sex, and difficulties around a homosexual partner having the same rights as a heterosexual partner remain commonplace. The disadvantage doesn’t end if the person is single either – a person with dementia who doesn’t have a partner, children or other loved ones to advocate for them is likely to have poorer experiences of health and social care services, and due to their sexuality, many older LGBT people may have become estranged from their family.

Life can feel very exposed for a person with dementia, and exposure may be the very last thing someone who’s never come out, or who struggled to come out many years ago, wants. A person may feel the need to come out repeatedly as they meet with the numerous different professionals that characterise most people’s experiences of health and social care services. Working out when it is ‘safe’ to disclose your sexual or gender identify can be difficult enough without the added complication of dementia affecting your cognition and decision-making abilities.

Issues around trust can be hugely challenging, not least since the person may be terrified of people who are effectively strangers providing care and support or any peers that they are living with in a care home environment making hurtful judgements should they learn the person’s sexuality or gender identity. Problems around personal care can be particularly acute, since the person may worry about being punished for their sexuality, or may be fearful of any scars from gender reassignment being noticed, commented on, discussed by colleagues or documented in a care plan.

We talk a lot in social care about supporting people to feel engaged and to express themselves, but if you’ve been born male and feel most comfortable identifying as a woman and dressing accordingly (or vice versa), trying to be yourself whilst living in a communal environment may feel impossible. For that person the risk of isolation and loneliness, and potentially more rapid progression of their dementia as a result, is a very real possibility.

So how do we overcome these challenges? I’m not naive enough to believe that care homes or other social care environments can universally become places that are welcoming and inclusive for LGBT people overnight. But while we cannot necessarily influence the viewpoints of the person’s peers, I believe that progress can be made in educating the workforce.

When I first designed my training modules a few years ago, I will admit I didn’t include education about any seldom heard groups. Now, I talk about LGBT, BAME, and LD communities routinely, as well as younger people living with dementia. Presenting the idea that staff may be supporting a person from the LGBT community and questioning assumptions is a first step towards improving inclusion. 

Importantly, it also ties in with everything I teach in relation to life story work. The idea that not everyone wants to share their life story, or that they may share what they believe are the ‘acceptable’ details, rather than those they fear are ‘unacceptable’, are some of the biggest challenges in how we understand the person’s past to improve their support today.

Acknowledging where difficulties like these lie, and pooling our knowledge to improve how we meet the needs of our ageing LGBT population, is so important if we are to make services more responsive to lesbian, gay, bisexual or transgender people who are living with dementia and need, more than anything, to feel less stigmatised… not more.

Until next time...

You can follow me on Twitter: @bethyb1886
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Home sweet home

I seem to have found myself quoting a particular statistic so much in the last few weeks that it is now imprinted in my mind:

Alzheimer’s Society: Fix Dementia Care Homecare report 

I include this stat in my dementia training for health and social care professionals, which might seem strange since many social care staff that I train and mentor are working in care home environments, but this one statistical sentence opens up so many extremely interesting discussions about the role of ‘home’ in our lives, the links to independence, choice and control, and the feelings and emotions evoked by ‘home’.

The role of ‘home’ in our lives

Why such an overwhelming number of people would want to remain at home is unsurprising. Our homes are meant to be our place of safety and security, places we personalise, feel comfortable, where we can truly be ourselves and do as we want.

So what about the 15% of people who don’t necessarily want to remain at home - do they not have all of those feelings about their home? They may well do, but those feelings are possibly tempered by concerns about family members providing care and support, or the person is living alone and considering a communal home due to fears about isolation and loneliness.

‘Home’ is a really interesting concept in dementia care. As a person’s dementia develops, the role of the person’s home can change: The person may form an attachment to their home that becomes overwhelming to the point that they won’t venture out, if the person does venture out they may not be able to find their way home again (even if they’ve lived in the same neighbourhood for many years), and sometimes home can become an alien place that the person no longer recognises, even though nothing has changed in numerous years.

Home, in the person’s mind, may become somewhere they lived in their childhood or earlier life, which could lead the person to go out to try and find that home again. “Please take me home,” may also be a frequently used phrase if the person is somewhere they don’t recognise, like a hospital, care home, or their own home that simply doesn’t feel like theirs any longer.

When ‘home’ is the problem

Often we assume that so long as the person remains at home, being part of that 85%, they will cope fairly well with their dementia. Yet the person’s home, for all its perceived familiarity and comfort, can sometimes unwittingly contribute to symptoms like disorientation and frustration.

Environmental changes are rarely high on the priority list when families are caught up in thinking about the person’s immediate care and support needs. Sadly, the knock-on effect of this lack of environmental awareness is family members, friends or neighbours gradually doing more and more for the person (and/or a crisis occurring), which can negatively impact upon those providing unpaid care and is even worse for the person with dementia.

In that utopian world where everyone has good post-diagnostic support - which I would argue is a human right - the person and their support network would be assisted to look at how the home is working for the person, with the end result being the creation of a more enabling environment (using the world-leading research from the University of Stirling as a benchmark), where the person’s independence could be preserved for as long as possible and their need for care and support reduced.

The home might be modified to include:

•   Word and picture signage to help the person navigate around their home, and instructions to enable the person to operate household items (or even just to be able to make THEIR guests a cup of tea rather than the guests taking over and doing it themselves).

•   Clear door and drawer fronts so that the person can see what is inside a cupboard or drawer.

•   Colour contrasts across the home but particularly in the bathroom so everything isn’t white.

•   A layout that reflects how the person currently moves around their home, and changes as the person’s needs change - for example, you might remove internal doors to avoid the appearance of barriers or the fear of what is behind a door when it's shut.

•   Lighting that supports understanding of daytime (especially when it’s really dull outside) and nighttime.

•   Technology that helps to support the person’s independence - a dementia clock, for example, could help the person know what the day/time is so that they can orientate themselves.

•   Accessible and enjoyable outside space - for many people, this aspect of ‘home’ is more important than the building.

When ‘home’ moves

So what happens if there is no option and ‘home’ has to change? Care homes are often seen as prisons, but your own home can equally become a place of confinement, which has led me firmly to the belief that what imprisons people with dementia isn’t necessarily buildings, but the attitudes of those around them.

That really gets to the heart of why I talk about that Alzheimer’s Society statistic so much. I want staff to be challenged to think about what home really means for each person they are supporting, and to think about anything and everything that we can do to make the person’s current circumstances, which may not be of their choosing (my dad certainly wouldn’t have chosen to go into a care home) the very best they can be.

This can happen in a variety of different ways, but broadly speaking it’s about maximising the person’s choice and control all day every day, promoting and nurturing their independence, understanding and really embracing the person’s life story in a myriad of guises, and perhaps most significantly of all, validating the person’s sense of what their home is, why it’s important to them, and getting as close as possible to providing the happy feelings they associate with their concept of home.

The ultimate interpretation of ‘home’

That last point is vital, because for everything that I’ve said about the building and contents that we call ‘home’, it’s the feelings and emotions that come from the people a home is shared with (a childhood with parents and maybe siblings, a young adult life as a newlywed, or the home where a person brought up their children) that make up the ‘sweetness’ in the title of this blog.

In those bygone days the building itself wasn’t necessarily the safety and security, that came from the person’s mum and dad, husband or wife. The comfort came from the cuddles and love that was shared. The fun came from the laughter and mess of a young family. The personalisation came from choosing furnishings and decorating as a young couple, and the freedom to be ourselves came from being completely at ease with those the home was shared with.

Whilst that ‘sweetness’ may be associated with many years ago, we can ensure it is never airbrushed out of the person’s life today. After all, would you want your ‘home’ lost forever?

Until next time...

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