Showing posts with label dementia friendly communities. Show all posts
Showing posts with label dementia friendly communities. Show all posts

Monday, 19 March 2018

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...
Beth x







You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

Monday, 8 August 2016

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...
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

Monday, 25 January 2016

Fixing dementia care in hospitals

Standards of hospital care for people with dementia made the news last week, with an investigation by the Alzheimer's Society showing shocking variations in the quality of care being given, prompting the charity to launch their 'Fix Dementia Care' campaign.

Given that this time four years ago my father was still alive, and had been the recipient of some extremely variable hospital care in the years prior to 2012, it is a source of huge concern and sadness for me that many of the problems we experienced continue today.

The Freedom of Information requests that provided the substance for the Alzheimer's Society investigation highlighted that people with dementia were:

    Falling while in hospital

    Being discharged at night

    Being marooned in hospital despite their medical treatment having finished 

Whilst my dad thankfully never had a fall whilst in hospital, being discharged at night was something he experienced on almost every inpatient stay. The reason given in his latter years with dementia when he was completely immobile was that he needed transportation via ambulance, and this was most easily accomplished at night when paramedics were less busy. Never mind what dad might have wanted of course.
 
I suspect the fact that he was being discharged to a nursing home, with staffing 24 hours a day, was also a somewhat convenient excuse. It was, however, a horrible experience for dad - these events often came in winter, and being moved out into the cold night air when he should have been tucked up in a warm bed was, in my view, a particularly sadistic form of 'care' that would leave him upset, disorientated and confused.
 
Being marooned in hospital was also a harsh reality for dad - at one point he spent three months in hospital (despite being medically fit for discharge) whilst funding was arranged for the care home placement that his doctors said he needed. During this time dad lost half of his body weight and the NHS picked up a huge bill for his care - a no-win situation for all concerned.
 
Alongside collecting data from Freedom of Information requests, the investigation by the Alzheimer's Society surveyed people affected by dementia. They found that 92% of those individuals felt that hospital environments were frightening and only 2% felt that all hospital staff understood their needs. 
 
Reading this led me to reflect on how my dad might have responded to his hospital experiences. I'm certain he found the hospital environment pretty unpleasant, from the noise, smells and routines of hospital life, to difficulties in finding facilities like the toilet and having opportunities for stimulation, occupation or activity during the long days as an inpatient. Only on one particularly 'fortunate' stay in hospital could I honestly say that dad had a better experience - he had his own room and staff found him a CD player. We brought in CD's for dad and his mood changed completely. Simple stuff, but so effective.
 
Sadly, however, meeting staff who understood dad's needs wasn't the norm. During the latter years of dad's dementia when he had dysphagia (swallowing problems), hospital staff refused to allow him to have food or to help him eat it, mistaking his hunger cries for pain and writing him up for morphine. This was a 'mistake' that could be interpreted as covertly putting him onto an end-of-life pathway by administering a drug that he didn't need and could have shortened his life with an inappropriate dosage.
 
Furthermore, this 'mistake' was only rectified because dad had a family visiting him for eight hours a day, speaking up for him, and bringing him food and drinks and helping him to consume them. We would also assist him with his personal care - without that help a man who liked to be clean shaven would have begun to grow a beard. But what happens to people without this family support? Do they get inappropriately medicated, starved, dehydrated or left dirty, uncomfortable and neglected? The variations exposed in the quality of hospital care suggests that this is likely to be a reality for some people with dementia who are inpatients today.
 
Despite the many difficulties we encountered with hospital care, however, I don't want to paint a completely bleak picture. There were good experiences, staff who genuinely cared and understood what dad needed, as well as providing great support for us. This was particularly evident in dad's last stay in hospital when he'd been rushed in with an aspiration pneumonia. 
 
His care was excellent, with the doctors treating him taking a lot of time and trouble during their interactions with dad and in their care for him, alongside explaining things to us and giving us time. Our decision to seek end of life care for dad from a care home wasn't because we were unhappy with his hospital care, but rather that the hospital couldn't offer the homely environment or privacy we felt he needed as his life approached its final stages. 
 
So, how do we ensure that hospital care is a high quality experience for every person with dementia? In my view providing comprehensive dementia education for all hospital staff (which Health Education England are tasked with delivering) and making environments more dementia friendly will only go so far.
 
The root of much of what is wrong stems from compartmentalisation. Hospitals work best when a person is admitted with one condition and treated for that condition. However, people with dementia often live with other conditions alongside their dementia, and are usually always admitted into general hospitals not because of their dementia but because of infections (mostly notably chest and urine infections), another long-term condition (like diabetes, heart disease or asthma) that hasn't been well managed, or because they've had a fall in their own home or in a care home.
 
This was never more evident for us than when dad needed hospital care during the last four years of his life when he had dysphagia. Treating a gentleman with dysphagia who also had dementia and all the challenges that brings around communication was an alien concept for most hospital staff, with approaches varying from the starvation I mentioned above, to trying to force a tube through his nose into his tummy rather than orally proving food (a tube he promptly pulled out), and providing ice cream (that quickly melted) as a suitable 'thickened' food for him (which in reality was as liquid as the water out of the tap).
 
What is needed to combat these issues is more holistic, joined up care that sees each person as a whole human being and treats them as such regardless of how many problems they have with their health and which of these problems has led them to be hospitalised. This approach needs to be combined with a comprehensive 24/7 service that enables individuals to access the care and support that they need when they need it. People can become unwell on any day and at any time - prompt treatment and, crucially, the availability of care and support when they are ready to leave hospital, is vital. 
 
Furthermore, if hospitals that are underperforming (as highlighted by the Alzheimer's Society Freedom of Information Requests) learnt from the hospitals who are providing some of the excellent care that the Alzheimer's Society found, these huge variations in care would become a thing of the past. It heartens me that some outstanding care does exist, but I remain saddened that so little seems to have improved since my dad was living with dementia. Clearly we still have a lot to learn.
 
Until next time...
Beth x







You can follow me on Twitter: @bethyb1886

 

Monday, 3 August 2015

Holiday season

August in the UK is traditionally seen as the holiday month. Apart from the fact that most families with school-age children are restricted to holidaying at this time of year due to education regulations, there seems to be a mass desire to ‘get away’ in what is meant to be the height of the UK summer.

With this holiday season in mind, I thought it would be apt to explore the idea of holidays, past and present, in the context of people who are living with dementia. Vacations are seen as one of the most positive and enriching aspects of life from childhood to retirement, but how do they fit with the stigmatisation of dementia?

People who are newly diagnosed:

One of the aspects of life that people often feel will have to end once they are diagnosed with dementia is going away on holiday. Holidays are frequently seen as the preserve of the young and people who are healthy and retired, while many people with dementia are subjected to Prescribed Disengagement™ (as described by Kate Swaffer, a lady living with dementia) upon receiving their diagnosis.

Of course we’re all different, and holidays aren’t for everyone. Certainly my dad, a man who never travelled beyond the UK and even then was reluctant to ever go to new places, would have viewed a holiday as an endurance rather than a pleasure, but if you’re a person who enjoys going on holiday a diagnosis of dementia isn’t a reason to stop doing what gives you pleasure for as long as you feel able to continue with that.

The challenges of change when you’re on holiday:

As much as a person with dementia and their loved one(s) might want to go away on holiday, there is often anxiety on both sides about how the vacation will work out. Routine is very important, indeed vital, for many people with dementia, and holidays are naturally a break with that, although depending on the type of holiday you choose you might still be able to keep some familiar routines.

Other concerns are often around travelling arrangements and time spent travelling, differences in living accommodation (layout/comfort/design), the geography of the local area and the availability of familiar foods. Sleep patterns can also be disturbed in unfamiliar environments, and changes in temperature/climate can be problematic.

To help avoid conflicts and upsets, it’s important to understand what each person on the holiday wants out of it and think about where you are going to go very carefully. Choosing a venue that is used to supporting people with dementia and their loved one(s) should help to minimise problems and give you the peace of mind to look forward to your holiday. 

Some suggestions of such venues are here: http://www.dementiaadventure.co.uk/adventures/venues (Please note this link is provided for information, and should not be seen as an endorsement of any particular venue or activity). For additional options, it’s always worth investigating assisted holidays for people with disabilities – it may not seem like an obvious internet search, but some companies that support people with physical disabilities may also have the ability or contacts to support people who are living with dementia.

'Respite' / carer breaks:

There is a perception of ‘respite’ for family carers that is characterised by the person with dementia going into care while their family carer(s) go away for a break. Whilst this may be a model that suits some families perfectly, it is important to recognise that other families want to do things differently. They don’t necessarily want to be separated from their loved one and instead want to be supported to go away as a family.

This is just another example of where a one-size-fits-all approach really doesn’t work, and the individual needs and wishes of families have to be explored and wherever possible supported and facilitated. Many of the holiday venues I’ve listed above do exactly this, and hopefully we’ll see many more examples in the future.

The cost:

Cost is a significant factor for most people when they are looking at taking a holiday, and many of us save for many months or even years to afford to go away. Such saving doesn’t always fit in with the unpredictability of dementia, however, and many people who are diagnosed feel an urgency to fulfil some of their travelling dreams while they are still at the height of their cognitive powers.

Other cost considerations when a person’s dementia is more advanced can be around paying for professional care, or taking a larger than usual family group on holiday so that relatives can take turns in providing more intensive care and support.

In addition, given that dementia care comes under the umbrella of social care, which in the UK is means tested, many people may simply not be able to afford to have a holiday because all of their income/savings have been spent on modifications to their home or professional care fees.

Reminiscing about holidays:

Even if health or financial factors prevent a person with dementia taking a holiday, it doesn’t mean that the many positive aspects associated with holidays have to be abandoned. Reliving past holidays through photographs, family videos, scenic pictures hung on the wall, exotic cuisine or music that is synonymous with vacations gone by can all help to engender a holiday spirit. Think too about textures and sounds - sand, rocks and wave sounds might help to prompt reminiscence about trips to the beach.

A few care homes I’ve visited have gone even further, creating beach ‘installations’ complete with deckchairs, sand and sea pictures, and some are regularly visited by the ice-cream van selling the traditional 99p cone with vanilla ice-cream.

Of course nothing will replace the excitement, discovery or relaxation many of us experience when we go away on holiday, but keeping memories alive when going away is no longer possible can still help to engender some of the feel-good factors associated with holidays.

Until next time...
Beth x







You can follow me on Twitter: @bethyb1886

Monday, 2 March 2015

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...
Beth x







You can follow me on Twitter: @bethyb1886