Living with dementia in a rural community

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, and for this post, I want to think about the challenges for people with dementia who are living in rural communities.

It’s a topic close to my heart - I’ve always lived in rural areas, and currently live over 11 miles from my nearest town. My dad was a farmer with a passion for the countryside, and he fostered my love of rural life, nature and the environment from an early age.

But whilst I love rural living, I’m also well aware that it isn’t without its challenges. Although rural communities can often be amazing at pulling together and looking after their own, there is no doubt that many people can also be very isolated and lonely if they become ‘cut off’ or reclusive.

For a person developing dementia, particularly if they live alone, that can lead to numerous problems. My dad went ten years without a diagnosis, and whilst I would be the first to admit that there were many factors that contributed to that timescale, I do wonder if living miles from healthcare services made him someone who was ‘out of sight and out of mind’.

Dad’s local town was 9 miles away, and although he was on a bus route the services weren’t as frequent as in urban areas. During his 10 years without a diagnosis dad stopped driving which made him even more dependent, not only on public transport but on his family too. I didn’t learn to drive until after dad’s diagnosis, by which time he was living in a care home, so it wasn’t like I was much use on the transport front either.

Had dad received a timely diagnosis, and had services existed back then that he or I had wanted to access (groups and therapies for dad, or for me, carers services), our involvement would have been dependent upon us having suitable transport that got us to these services at the right time. For many people living in rural communities, these are sometimes problems that prove insurmountable.

Reflecting now, I also see how lucky we were that dad didn’t get into serious difficulties living surrounded by fields (the garden backed onto open farmland), ditches and streams whilst he was developing dementia. The countryside was very picturesque, but had dad decided to go out walking and then become unable to find his way home, it’s quite possible no one would have seen him, let alone found him, potentially until it was too late.

Urban areas tend to have more landmarks, in terms of buildings and points of interest. There are also many more CCTV cameras and members of the public who might see someone with dementia who has got lost whilst walking. Finding a person with dementia who is confused and disorientated in that environment is possibly easier than in the countryside.

My dad was living on the edge of a small village, so we weren’t completely cut off from civilisation, but many people living in rural areas may be far more isolated down a dirt track without another house in sight. If bad weather then hits the potential for difficulties or disasters becomes considerably greater.

Of course it isn’t just about hazards and problems. Many people living in rural areas benefit from cleaner air, more open spaces and opportunities to absorb themselves in outdoor pursuits that improve their wellbeing. Even being able to sit by a window and look out onto open fields and watch the animals and birds, enjoying how the changing seasons alter the natural landscape, is something many people in urban areas may crave.

Isolation and loneliness isn’t just reserved for individuals living in the countryside either. It’s often said that you can be surrounded by people in a town or city and yet still be the loneliest person in the world. Just because you have countless neighbours all around you, doesn’t mean anyone will actually knock on your door.

But I do firmly believe that people living with dementia in rural locations face some specific challenges, particularly around accessing services and support and remaining safe and well (although not resorting to being risk adverse), that require all of us to consider how we are reaching out to these individuals and communities and making our services and support accessible. Yes, some dementia friendly community work has happened in rural areas, but certainly not in all of them, or even the majority.

Where I live is currently undertaking a neighbourhood development plan survey, and one of the areas I’ve highlighted in the lack of retirement and extra care housing, and residential care services, for our ageing population. People who live in rural areas have every right to reside in the location of their choosing - they shouldn’t be forced to move to an urban area if they don’t want to just because their needs are changing and there is a lack of services and support in their locality.

Of course there are always challenges to find staff, and run health, social care and third sector services in rural areas that are sufficiently used that they remain viable, but as a country we need to become much more innovative about supporting people in every community, regardless of how rural they are, to lead the life they want, including when they are living with dementia.

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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