Monday 18 April 2016

Living with dementia in your own home

Whenever a report on dementia talks about what people with dementia want, enabling the person to remain in their own home for as long as possible usually features pretty highly. A diagnosis of dementia should never mean that you have to leave the environment that you are most comfortable in at a time when so much else in life may be feeling uncertain, although sadly for many people with dementia what they may want often isn’t what ends up happening.

In my dad's case, the combination of his diagnosis coming ten years after his initial symptoms began, mobility problems with his knee, living in a rural location and, most importantly, a sharp deterioration in his dementia following a significant stroke (which was what finally led to his formal diagnosis of vascular dementia), meant that his doctors ruled out any return home from hospital, and he went on to spend the last nine years of his life in care homes.

I have many happy memories of those nine years, and this blog certainly isn't intended to 'bash' care homes, but it is fair to say that given the choice I'm as certain as I can be (bearing in mind I can't ask my dad) that he would have preferred to live those nine years in his own home. For people in different circumstances (IE: a more timely diagnosis, less advanced dementia, and potentially living somewhere less isolated) remaining at home should be the default option, unless they expressly want to move into a care home.

The main barriers to a person with dementia successfully living in their own home are usually:

   Living alone, without a family member to support them, or carer breakdown because too much pressure has built up on a family member who has been providing support (I've written about carer issues here).

   Lack of funding (either personal or public) to engage professional homecare support, or an inability to find reliable and specialist dementia trained home care support (I've written about homecare issues here).

   An environment that, however familiar it's been in the past, has now become a hostile place for the person who is living with dementia.

It is often very difficult for the family and friends of a person with dementia to understand how somewhere so familiar as the person’s own home can potentially become such a hostile place for them as their dementia progresses. After all, that familiarity is usually the main argument for the person remaining in their own home. It is worth considering that aside from the obvious issue that the person with dementia may stop recognising their home as their home, the home itself can present significant issues.
It's pretty rare that any of us signpost up our houses - we know which rooms are what, and what lies behind every cupboard door. But for a person with dementia, it may become vital to use signage (text and pictures/photos) around the home in order for the person to successfully navigate around their environment every day. Doing that can also help to avoid incontinence issues, because the person has visual clues about where the toilet is and can hopefully get there in time. In addition to signage, you could also repaint doors to colours that contrast with the walls surrounding them.
Once in a bathroom, most of us like to have everything matching and often white, but it's well known that a person with dementia may struggle to navigate the bathroom if everything blends in together. What can really help is to add some colour, for example by changing the toilet seat, toilet flush lever and shower curtain so that these items stand out.
Kitchens are another place where we like to have matching items, with fitted kitchen that have numerous identical cupboard doors and drawer fronts. Again, some signage can assist a person with dementia to find what they are looking for, helping them to retain independence in the preparation of food and drinks. An alternative to signage might be to replace the existing solid doors with glazed doors, or some open areas like a plate rack and mug tree so that these items are clearly visible. Signage, changing doors or having open areas also applies to other cupboards around the home, for example in the bedroom or bathroom.
It's not all just about signs either - lights can also help with navigation, particularly at night, and often at floor level to guide the way to the bathroom or down the stairs. Contrast is also important at the dining table – if the table cloth and the plates for eating all match, it can be difficult to know where to place food and eat it.
If there are concerns about a person falling, sensors can help to monitor movement, and for people who are living alone, call bells to alert family or emergency services if the person has hurt themselves are vital. Likewise there are also sensors to prevent flooding (from taps not being turned off) and to make cookers safer. It's also important to think about security - both from bogus phone calls and undesirable people who may come to the front door.
Other environmental changes might include removing or covering mirrors, if the person is experiencing difficulty understanding what they see in a mirror. Think too about flooring and furnishings. Patterns can become distorted, so be mindful of this in relation to wallpaper, and some flooring can appear to look like glass or water. Changes in floor coverings from room to room or using rugs can all be problematic as they may appear to indicate a step to a person with dementia. Even the TV can be an issue if the person struggles to understand that what they are seeing is on television and not actually in the room - this was a problem my dad had in his early, pre-diagnosis years.
Eventually, items like a stair lift, adjustable chair, profiling bed and bathroom modifications like a walk in shower (with shower seat) and even a hoist may be needed. There is no denying these items are hugely expensive, and even some of the more 'low level' modifications listed above come with a price tag attached.
So what happens if you can't afford to make your home more 'dementia friendly'? In short, you probably end up in hospital or a care home, often before you really 'need' to, just like my dad did. That is the sad and frankly shocking reality. Little has changed in the 13 years since my dad was in that situation, except that more people are being diagnosed with dementia and the UK is deep in austerity.
To be a country that is truly the best place to live with dementia, we have to find a way to support what sounds like a very basic aspiration - "I want to remain in my own home" - at a time when trying to get help from your local authority for care and/or equipment needs is likely to be met with anything from resistance to outright rejection.
I would, however, implore all families to do what they can - even the very low level things like signage, a night light, and making your bathroom less 'white', will go go some way to supporting a loved one and prolonging that period of living at home. One of my main criticisms of the film 'Still Alice' was that it didn't portray the things families can do to help their loved one to navigate around the home. For an educated, resourceful family like the Howlands it was astonishing that such modifications of the environment didn't happen as a matter of course. For anyone reading this blog who finds themselves in the same situation, I hope that there is some inspiration for you to do things a little differently to Alice Howland’s loved ones.
Until next time...
Beth x

You can follow me on Twitter: @bethyb1886


Monday 4 April 2016

Finding the value in every generation

Prior to becoming a mum, I wrote extensively about my experiences of caring for my dad. In many ways those experiences were a unique preparation for parenthood. Not in a disrespectful way - I never viewed my dad as a baby – but in the context of another human being depending on you and how that is a responsibility unlike any other.

During my years caring for my dad I discovered the harsh reality of the way the parent/child relationship changes as dementia progresses. I became more like a parent to him, in terms of being asked to give permission for him to do things like going on day trips or having medical treatment, and he also needed me, or another family member or care worker, to help him to eat, drink, dress and wash.

From all of the experiences I had with my dad, some resonate more now that I am a mum, and in particular the occasions we would take dad out, for example to coffee shops, and how people reacted to him and to us. I spoke candidly about this in my film for the 2013 G8 Dementia Summit where I said:
"We would take him to coffee shops, and for the last four years of his life dad had a swallowing problem, which meant that we would need to spoon drinks into his mouth. And you will get looks from people, because they're not used to seeing something like that, but that wasn't going to stop me from taking dad out. He enjoyed it and the interaction was good for him."
Now, instead of pushing a wheelchair into coffee shops I push a pram, and the reaction from fellow customers is very different. People come up to us to say how beautiful our daughter is, ask how old she is, comment on her smile and coo over her. All of which is absolutely lovely, but it does make me think. What I would have given for just one person to come up to us when I was out with my dad and greet him (yes, my dad, not me – a person with dementia should be directly addressed, not through a carer or family member), say something nice or even just smile at us.

Instead the looks were often cutting, pitying or even disgusted. The words were conspicuous by their absence, although you could sense the muttering disapproval in hushed tones around us. I'm not bitter, far from it. We had many happy times out together as a family and didn't need anyone else's contribution to those occasions to improve them, but a little kindness from strangers would have still been very welcome.

But I'm not naïve. Long before I was a mum, I wrote about the appeal younger people have that older people largely don't. I appreciate that babies are a magnet for fascination and comment and I wouldn't want to change that. I would just love to see a change in attitudes that reflects the value in every generation of human being.

As a society we have become more 'dementia friendly' in the years since my dad's passing in 2012, and sitting in a local café recently with my mum and baby daughter, I was delighted to spot a 'dementia friendly' sign. I made a point of speaking to the café owner about it and what it meant to him, his staff and his business.

He spoke about how being welcoming and understanding towards people who have dementia has made his café a magnet for families who have a loved one living with dementia. People who are living with dementia, their partners and families come and spend their money in his café because it's a place that makes them feel comfortable, where staff give them time, and are flexible and responsive to any additional needs within an environment that is easy to navigate and homely.

Having somewhere like that to go with my dad would have been wonderful, and anything that encourages more businesses to create an offering to customers that is inclusive towards people who are living with dementia is to be applauded. All the better too if fellow customers also adopt the mind-set of the people owning and working in cafes like this, and play their part with kindness and compassion.

I fully appreciate that to change attitudes to an extent that older people, and people living with dementia, are as welcome as cute, chubby-cheeked babies is probably unlikely, but if every parent teaches their child to value, respect and be kind to people of more advancing years and those who are living with dementia, then perhaps in the future we will be able to say that the UK really is a good place to grow older and to be supported, whatever life throws at you.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886