91-year-old Les Hadley of Poppy Lodge
Photo: Creative Commons
Two moments stood out for me as I watched the first of Channel 4’s three-part Dementiaville series, billed as a programme exploring a radical approach to dementia treatment being used in a Midlands care home’s specialist unit called Poppy Lodge.
The first was when Marie, whose 56-year-old brother has a rare form of the condition called Pick’s disease, said of her younger sibling, “I took him to school for the first time, now I’ve had to take him into a care home – I can’t tell you how sad that was”. Bound up in that sentence is all the grief, confusion and disbelief that comes when someone you love has dementia. I know because my mum lived with it for 10 years before she died in 2012.
The second was when Jean, struggling with the fact that she’d had to move her husband of 58 years into Poppy Lodge, said she’d dared not look back at Bob as she’d left for fear she wouldn’t be able to walk away. Jean’s words brought back painful memories of when I used to swallow hard and stride quickly out of my mum’s nursing home, eyes front, fearful of being undone if I saw her watching me from the window. Dementia is hard to live with for everyone involved, in so very many ways.
Yet this hour-long programme, with its emphasis on a model of care that sees carers entering into the perceived reality of those with dementia – be it a Riley car factory or a former matron’s hospital – managed to be person-centred and positive. It probably did more in 60 minutes than almost anything else I’ve seen or heard to redress the media’s often negative portrayal of a terminal condition that those of us in the UK who are over 50 now fear more than cancer.
As such it is greatly to be welcomed and I look forward to watching the next two episodes. A scan of the #Dementiaville timeline on Twitter showed universal praise for the first one, with many tweets wishing that Craig Edser, Poppy Lodge’s activities-co-ordinator, could be cloned and placed in every care home in the land. From what I saw, I’d have to agree.
And yet, and yet. I wish there had been a little more grit, a little more scratching under the surface of what dementia is and what it does to families – a closer exploration of what lay behind the complex emotions expressed through the haunting words of Jean and Marie.
This could just be the journalist in me coming out. It could be that the next two episodes will address my concerns. Or it could be that the programme affected me as it did because, over two years after my mum died, I still feel the guilt of placing her in a nursing home that, unless I’m much mistaken, wasn’t a patch on Poppy Lodge.
I remember the phone calls I received from members of staff telling me that mum had been hitting other residents with her walking stick – and my initial reaction of horror and disbelief rapidly giving way to panic as I realised that I may have to move her to another home.
I remember the woman in mum’s dementia wing who used to screech and wail. Her carers – not nearly as well trained in the condition as those in Poppy Lodge and whose English (dare I say it) barely allowed them to communicate with me, let alone with those with dementia – did their best to pacify the wailing woman, but her cries rarely stopped.
I longed to know how Craig would deal with someone whose dementia made them more belligerent (more like my dear old mum was for a while) and less seemingly endearing than Les, John or Effie (the Poppy Lodge resident who thought she was matron).
I can already hear my critics saying that I can’t have it both ways: I can’t wish for more positive media stories and then carp that a programme is, in effect, too positive. But touches of shade highlight the sun’s strength.
For me, watching Dementiaville seemed a bit like being transported in a very fast car over rough terrain in order that I wouldn’t notice the bumps. This was probably largely due to the soundtrack and editing. So my reservations may simply be because my world is words, not pictures, and this was TV.
Like many who took to Twitter, I too wish there were more Jo-Annes and Craigs in our country’s care homes to take residents with dementia on regular swimming trips and extend them such patient, thoughtful care.
I have nothing but respect for everyone involved in the programme. I just wish that some of the roughness, the rucks and ridges that must exist in Poppy Lodge – because, quite frankly, dementia is like that – hadn’t been quite so slickly smoothed over.
Had the film’s makers allowed a little more grittiness, a few more awkward, difficult moments (not sad ones, there were plenty of those) to make it onto the screen, a very moving programme would have been made earthier, realer and better for me. Though, judging by Twitter, perhaps not for you.
Lovely post, Pippa. Brings back so many memories and the fear I felt when I journeyed with my mom and dad.
Thanks Jean. Yes, I found Jean’s words very haunting and it took me right back too.
Dear Pippa, thank you for your honest post. The compassion shown for residents by Craig and the carers of Poppy Lodge made well up with tears. That’s how care homes for people living with dementia should be run.
I agree with you 100% about the lack of grittiness in the programme. like yourself, I was also waiting for a Poppy Lodge resident to start turning the air very blue with colourful language or show moments of violent, aggressive or inappropriate behaviour.
Hopefully, the programme makers will explore this area in more depth during the next two episodes. It is imperative that people who are watching Dementiaville understand the reality of dementia and the behaviours a person with dementia may display as their condition progresses. They also need to show the impact this has on family and loved ones who are caring for the person who is living with dementia in their own homes.
Sidonie, thank you very much for taking the time to comment. I am hoping for more grit in episodes 2 and 3 – let’s see. We want to end the stigma surrounding dementia, of course, but it’s no good hiding its reality.
Hi Pippa
Such an admirer of the work you do to raise the profile of people experiencing a dementia and families who are living this together
Thank you for your great blog on Dementiaville which is exactly what Dementia Care Mattters wanted to create
So much I could say but I wanted to respond on a key point about the lack of grittiness
That is the whole point – that there needn’t be grittiness if a real approach to being person centred is working in a care home
So often about Butterfly Care Homes people say when visiting ” ah but the people you are looking after are nothing like as ” bad ” as the people we are – you should see the behaviours we have to deal with ‘” and I always reply with ” really ? ” – do any of us want our behaviour dealing with or do we want to be reached?
Of course the people at a Poppy Lodge are no different and their level of dementia is just the same as everyone else living in care homes – it’s the approach that’s different.
Until we accept that it isn’t dementia that causes behaviours but instead being pushed to the edges of what it is to be a person that is the problem then we can continue to pathologise people experiencing a dementia
Once we accept that always it is a feeling that leads to a ‘ behaviour ‘ – that it is a culture of care that leads to these ‘ difficult ‘ expressions then we have to accept that it is a malignant care culture that kills a persons spirit inside where they have nothing left to do or be other than to show it
This is not to pretend it is easy nor that there aren’t daily challenges in reaching people nor that family carers are in any way to blame – people do their very best in the most exacting and trying circumstances – but if no one has said or shown someone there is a language of dementia nor that people living with a dementia are more feeling beings than thinking beings nor that logic reasoning and facts won’t work then ‘ behaviours ‘ will naturally be seen as this rather than as an expression of the spirit inside someone saying ‘ please reach me ‘
The grittiness of dementia care is in everyone’s feelings living working or supporting someone rather than in behaviours – it’s an emotional journey.
I am glad you felt it was a positive programme – the care home sector has been so beaten up that we wanted to show it could be and is different in all those care homes who accept people as they, recreate peoples memories to help people to be who they were and have removed all symbols of ‘ them and us ‘ barriers of power and control that would lead any of us to rage against the world
I am currently on a speaking tour of Australia where the emphasis here is so much on responding to severe behaviours in dementia care rather than on changing care cultures that it feels sometimes it is our reality that is not orientated on what matters most in being human
There are no experts in dementia care it requires thinking outside of the box constantly and you are only as good as your next idea – what worked minutes ago might not work next time – and families cannot be superhuman but so much of the grittiness could be lessened.
I think the next two programmes show the raw emotions that this creates in partners and families just doing their best to be together
I will be very interested to hear what you think of the next 2 programmes
Thank you very much for your very comprehensive reply from the other side of the world David. I’d love to have a good talk through all this when we next meet.
Hi Pippa
I’ve been googling reviews of Dementiaville and will be watching tonight. I wholeheartedly agree with the ‘gritiness’ comments. Yes, treating people differently can make a massive difference I’m sure but there were no glimpses of people who simply couldn’t remember how to stand up/sit down, who though the floor was moving when they walked and who cried out for help but couldn’t remember why. I’m trying to find somewhere for my mum now because her current home can’t cope with her behaviour and the dementiaville approach could sort a lot of it out but I still wonder how they’d cope with someone who ‘gets lost’ in their own bed….
I’ll be watching with interest/envy….
Pippa, thank you for your frank comments about the “other realities” of dementia and the challenges that family members and caregivers face. The belligerent outbursts are especially frightening to everyone. I can still remember caring for a man who was three times my size who became belligerent and threatening to some of my other patients. The situation was dealt with safely – but that was 25 years ago! Those memories remain for a very long time. Sadly, at this point in history I suspect that the media and those who oversee what is viewed about dementia still choose to focus on more sanitized images of persons with dementia. I hope the other two episodes offer some helpful information to the viewers.
Thanks again for your blog postings.
Deborah Forrest, Author, Touch the Spirit: Connecting to the Inner World of Dementia