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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The dementia-friendly shopping experience

One of the most extraordinary comments I heard in the wake of Alzheimer's Society launching their guide to becoming a dementia-friendly retailer was from a shopkeeper who said: "Why on earth do I need to make my shop dementia-friendly? Dementia sufferers shouldn't be going shopping - they might forget to pay."

I won't print my response. And by way of clarification, the quote is reproduced as the person said it, and perhaps the lack of appropriate language is, in this instance, illustrative of a particularly backward attitude.

Apart from proving we still have a long way to go to tackle stigma, discrimination and negativity towards people with dementia, this comment also shows EXACTLY why we need to make shopping easier for people with dementia. Individuals living with dementia have as much right to get out and about in their communities as anyone else, and fellow citizens who suggest otherwise need to be challenged about their viewpoint.

It always strikes me as contradictory that there is a desire to close down a person's life as they age, and yet their earliest memories are likely to be of the world being opened up to them, and them being encouraged to explore, develop and learn. Instinct teaches us that this is the route to survival, and parents are actively encouraged to ensure their children take every opportunity to familiarise themselves with, and test, the world around them.

It therefore makes no sense for our society to try and strip away this survival instinct, and I wholeheartedly welcome any move that might make local communities more accessible and less intimidating for people with dementia. For many people, shopping is an activity that they associate with discovering new things, and the fun and happiness of finding what you are looking for – indeed, nearly 80% of people with dementia who were surveyed by Alzheimer’s Society listed shopping as their favourite activity (although 63% didn’t think shops were doing enough to help people with dementia) - so it's vital that we make the environments that deliver these experiences suitable for everyone.

For me, there is a really important argument here about dementia-friendly communities benefiting all of us. I have questioned the wisdom of dementia-friendly checkouts before, arguing the need for all checkouts to automatically be ‘dementia-friendly’, because the elements that go into making a dementia-friendly checkout are potentially something that many people could benefit from.

Maybe a better shopping experience might even tempt me back to the shops. I have developed a personal dislike of going shopping, probably because trying to accomplish this with a baby and a pram isn't easy. The difficulties I've encountered have certainly made me think about how a person with dementia might cope, particularly if they happen to be in a wheelchair. Signage and availability of lifts and toilets is often poor, and the lack of these can cut a shopping trip frustratingly short.

Then there is the classic example of staff who don't know the products in their store (something I fell victim to in a major garden centre chain recently), and as Ann Johnson points out in this film, the highly confusing example of shops moving their products around. I know why they do it, they want customers to spend more time trying to find what they need and in the process see other products, but it's so unhelpful if you are expecting the items you need to be in a certain place and they aren't there.

As a result of all my gripes and grumbles I'm mostly sworn off going to the shops now, preferring online options. That does mean more trips to the post office with parcels to return, however, highlighting the need for local services like a post office and for the staff within those services to understand the needs of all of the people in their community.

Most people with dementia tell me that counting money is by far their biggest challenge, and this certainly rings true with what Alzheimer's Society are reporting. Then there is the difficulty of selecting the goods you really want. Prior to my dad's diagnosis he would often shop in a very random way, bringing home items from the supermarket that didn't correlate into meals he would want to eat, and going to other shops and auctions, spending a lot of money on things that weren't worth what he was paying for them and that he didn't need.

In hindsight, I suspect that this was often due to going around shops and picking up things that looked appealing, or that seemed familiar to him on that day. He could easily have been seen as a 'soft target’ for unscrupulous people who just wanted to sell him something, regardless of whether he actually needed it or not.

So what does a good example of supporting a person with dementia as they go shopping really look like? ‘Family’ parking spaces (rather than just ‘parent and child’ parking), good signage and easy-to-find and use facilities (like toilets), good lighting and not bombarding the senses with loud music or announcements, appropriate flooring and careful use of mirrors, good availability and labelling of products, staff training in helping customers who are living with dementia, different payment options and support with counting money (with staff being completely honest and trustworthy in that process), giving time, and being kind and attentive - perhaps offering to accompany a person around a large store like a supermarket so that they can find what they are looking for.

It's also about recognising a person's right to a shopping experience that makes sense to them (which means each individual, not a one-size-fits-all) and tailoring the amount of help/support offered. It's about forming relationships with regular customers, something small independent shops are often great at but bigger stores with higher staff turnovers can struggle with. It's about not being judgmental, and from a purely business perspective, understanding that whoever your customer is, and whatever physical, mental or cognitive challenges they have, their money is as good as anyone else's in your till – the ‘business' case for being ‘dementia-friendly’ is clear from the Alzheimer’s Society retail guide.

Ultimately, a person with dementia may not remember you, but they will remember how you made them feel. That, for me, really sums up how you make a shopping experience for a person with dementia the stress-free, enjoyable time it should be.

Until next time...

You can follow me on Twitter: @bethyb1886

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One million friends, but we need specialists too

Like many people who have supported the Dementia Friends initiative, I was delighted to hear the announcement that the target of creating one million Dementia Friends was recently reached.

Dementia Friends is the UK Government's initiative, in partnership with the Alzheimer's Society, to increase basic awareness of dementia within, initially, England but now also in Wales and Scotland. To become a Dementia Friend you undertake training, either in person or online, and are asked to commit to an action as a result of your increased knowledge of dementia. To become a person who delivers the training - a Champion - you complete a one day course and are then equipped with resources to go back to your community and hold face-to-face training sessions.

I trained as a Champion in May 2013, and although I wouldn't say that every aspect of Dementia Friends is perfect, its benefits should be recognised. Increasing dementia awareness, even at the most basic level, is generally a positive step forward. Likewise, giving people something to belong to by giving them a badge, and a real sense of joining a social movement for change is also a positive example to set.

Sporting my Dementia Friends badge

Some of the main problems with Dementia Friends have come from the name itself, which some people have misinterpreted as suggesting that people who become Dementia Friends then go out and befriend random strangers who are living with dementia. Equally, the idea that people are 'trained' gives the impression that this is comprehensive dementia training which replaces other forms of more in-depth, and potentially costly, education.

To be fair to those who have pioneered Dementia Friends, both of these common myths are roundly condemned by the official literature that accompanies the initiative, but never-the-less, I still encounter health and social care organisations who believe that giving their staff Dementia Friends training means they have trained them in dementia care. They have not.

Dementia Friends isn't without its critics, and equally its hardened enthusiasts. I sit somewhere in the middle. I like the basic concept, the positive way it's been embraced by people who have never even thought about dementia, and I am happy to wear my badge. Indeed it goes everywhere with me and has proven to be a great conversation starter.

But where to now? The next target is to create another three million Dementia Friends, which certainly demonstrates ambition, but while we increase the community-wide understanding of dementia, there remains a question mark over how much money is going into the specialist support that is desperately needed.

The training of health and social care professionals is still clearly not at the level it needs to be, and may be many years away from universal tangible improvements, no one really knows. The quality of training in health and social care settings is hugely variable, and the new Care Certificate will only go some way towards bridging that. The vast majority of training still never really gets to student's heart and soul in a way that will be utterly unforgettable, and will permanently improve their practice and inspire them to deliver the very best care. Such an impact is as vital for newcomers in health and social care as it is for those who have been working in these professions for numerous years.

For people who are living with dementia and their carer(s) and families, access to dementia support workers, befrienders and other associated facilitators and providers of support and information is patchy and their skills aren't universal, so if you happen to be assigned a hugely knowledgeable and empathetic individual that’s great, but you may very well never meet such a person. Equally, there is no national programme to offer training to people with dementia or their carer(s) in a bid to help them to live as well as possible throughout their life with dementia.

The idea of dementia coordinators to help those affected by dementia navigate the services they might want to access has long been muted, but again, this isn't universally available. There is an expectation that GP's coordinate, but you can't do that effectively in 10 minute appointments, and besides, many GP's would argue that they need more specialist training in dementia to take on such a role. 

Primary care and community (district) nurses are potentially ideally placed to provide specialist dementia support, especially in the case of community nurses who are visiting people at home. However, there is no national scheme to recruit and train the additional numbers of nurses who would be needed in order to provide this type of service to everyone who wants it, and besides, where would the money come from?

Then of course there are Admiral Nurses - specialist dementia nurses who are to dementia what Macmillan nurses are to cancer. Admiral Nurses have been credited with providing invaluable support to families affected by dementia, in some cases even saving carers from potential suicide, but they are not trained by the NHS or Social Care. Admiral Nurses are provided by Dementia UK - a charity who are dwarfed in matters of dementia policy and strategy by the Alzheimer's Society. 

Admiral Nurses are seen by many people as an expensive option, but evaluation exercises are starting to prove otherwise, and frankly even if they are an expensive option, if they provide the support that families need then I would suggest that in a compassionate society that’s aiming to lead the world in dementia care and support, it is a price worth paying.

The money that has been invested into creating the social model of dementia awareness (£2.4m is quoted in this press release announcing Dementia Friends, while Public Health England issued a call for advertising agencies to pitch for the ‘Dementia Movement’ brief in 2013) may have been well spent considering targets have been reached. It can only be hoped that our communities are enhanced by having this greater understanding of dementia. 

My fear, however, is that without the specialists to call upon for each and every person affected by dementia, the overall aim of enabling people to live well with dementia will be lost. I’m sure that life for my dad would have been improved through living in the age of one million Dementia Friends, but I also know that through the many difficult challenges we faced, the decisions we had no idea how to make and the questions we had that went unanswered, that families affected by dementia often need a bit more than just a friend.

Until next time...

You can follow me on Twitter: @bethyb1886

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