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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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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