I have Posterior Cortical Atrophy, a rare form of dementia. It affects my senses, in particular, my eyesight. I used to work in social care caring for people with dementia, and now realise that, with the best of intentions, we were doing things wrong. The willingness of organisations to listen to us who have dementia is very much based on postcode. Alzheimer’s Scotland listens to us, and more importantly enables us to speak. As with all things NHS, their willingness to listen is “post codal”. One major exception, in my experience, is any Local Authority: they are very top down and all training is from professional trainers. This blog is my attempt to right this and publicise what people with dementia, and their carers, believe is the best care for them. After all, we live with it 24/7, “experts”, and other professionals, do not, so with the best will in the world, how can they know?
My posts will be irregular but please contribute and pass it on…. I have tried Twitter but all the posts overwhelm me, sorry
In other words; who checks the checkers. In this case, who audits that charities and other organisations actually do what they say on the tin. My particular point is regarding including those to whom the grant is going in deciding where it should go. Many charities say that they do this, but I have always wondered who actually checks up on this.
There is the Charity Commission, but their remit is very broad and cannot check on such matters all the time.
I found the answer for at least one Charity; Life Changes Trust ( which has been given £50 million from the lottery to distribute in Scotland). The answer is a small group of pwd with researchers. This is a very good idea, and should be copied by such groups as Alzheimer’s Society, and other charities (I include charities from other areas such as the environment and overseas aid etc).
Another point is who decides the priorities of a particular charity? Do they do “market research”, or do they listen to paid staff. For instance do you prioritise research for the future or wellbeing for the present? My next blog will be about this question.
I was at a social event recently. It was bright and there was music. I was my usual self until I came out of the venue. I had to close my eyes and walk as if blind. It was terrible, Ethel walked in front of me and had to tell me which way to turn. I used my walking stick like the white cane but it was no use. My brain was completely useless; is this how I will feel all the time in the latter stages?
Feeling a bit scared 🥶
I can see both sides of this argument as having been on both sides. Paid professionals tell us they are on leave, yes they need time to recharge. But what about us and our carers who cannot get this time! What is good for for one person should be good for all.
Carers and pwds live with it 24/7, no break. Respite is hard to come by; it should be a right.
Ironically, when a professional I used to think that I couldn’t do it 24/7, now I live with it all the time. Be careful what you think!
Various comments and meetings over the past week have made me think about this.
The first observation is that virtually all the photos on leaflets and stock images in papers are of elder folk with dementia which reinforces societies view. Why cannot Alzheimer’s Society and other organisations use us younger folk? For instance, a picture of someone with PCA, their eyes screwed shut in bright light? Other people will have other, better, ideas.
The other, more controversial, observation is that I believe that dementia IS gender neutral. There might be more diagnoses in women, but this is probably because Drs don’t diagnose it in men enough for old fashioned reasons. To have separate cliques for women only is very divisive, and dare I say it old fashioned. We should be beyond calling ourselves or our group “victims” of gender bias. I thought the dementia was meant to be very inclusive not exclusive; don’t get me started on distances to go for meetings! If a pwd feels uncomfortable talking in front of fe/males, they should consider private conversation 1:1. If a meeting of pwds does not allow the carers in, that is also exclusive, as carers are as important in our fight. I could not go to such a meeting as my carer has to take me to the meeting; what is she to do? Be a spare part in a cafe? What message does that send…
Gender in social care is another issue altogether which I will look at in another post.
In the last week I have inputted into both Aberdeen city’s and Aberdeenshire’s dementia strategy. There is also another meeting on Thursday for Aberdeen regarding dementia friendly communities.
The two approaches could not be more different, as in real life, the city and shire are chalk and cheese! The shire, where I actually live, used storytelling to ask the participants their views; as far as I could see this worked (in that I got my views across!), however whether the moderator actually got what they wanted/expected I don’t know. The actuality of life as a person with dementia, or as a carer, seemed to shock, both the moderator and the other professionals, especially when we quoted words and phrases used by the local authority social services. I did not hesitate to praise the positive points as well.
The city meeting was about housing and tech. It was formal, and Ethel and I were there as a pwd and carer. We tried to ensure that we, the end customer (in the jargon), were never forgotten. There seems to be a lot of tech available to assist us, the trick is to get the right level of tech for the individual pwd. I truly believe that as our generation, and younger, get more diagnoses of dementia that tech will be more easily accepted. Housing seems to be a problem, as we are all different the Housing Associations don’t think it will be cost effective to make individual alterations. In Scotland, anyway, there are LA departments that will do minor repairs for nowt; like repairing locks etc. The Occupational Therapist can get alterations done for free too, like bath hoists and grab bars.
Going forward, as I said there is another meeting this week in the city, so I will report on that, and the shire has promised that I can be involved a bit when staff are brought into it.
A recent discussion on Twitter has made me think about the above.
I am unusual in that I used to work on fraud cases, hold taped interviews with claimants and make decisions on such matters. Now I am a claimant.
My time doing the above was last century (sounds years ago). Even then, the system ethos was not to believe the claimant. Every single little thing had to be proved, and judgement decisions were always difficult; whether it was a genuine mistake or deliberate fraud for example. How there can be a quota for decisions is beyond me.
Nowadays, as a claimant it seems even worse. The forms for PIP and ESA are even more horrendous, but at least I realised that you have to be very negative and put down yourself on your worst day; very soul searching. As for the assessments; the assessor should be allowed to stop asking the rote questions (they are rote, you can see the assessor reading down the computer screen), if it is obvious the claimant is genuine. My ESA interview went on for 45 minutes although I was out of it after 5 minutes.
Society has been conditioned to accept that all claimants of disability benefits are on the fiddle. Especially, those of us with hidden disabilities.
That’s enough ranting..
God, there are times when I hate this disease. Tiredness is a massive problem at the moment; not true fogginess, but fatigue.
I try to stay positive with all my campaigning and socialising, but doing too much tires me out and the time to slow down is ever changing, sometimes allows more, mostly less. So, I never know when I have crossed the line as the adrenaline kicks in until I stop.
Stopping altogether is not an option!