Why acceptance of social care need isn’t always a given…..

Yesterday I trundled to York Uni. I’m involved with a study being carried out by Mark Wilberforce, Senior Research Fellow at the Social Policy Research Unit. Some time he asked if I would be interested in working on his project around helping older people to engage with social care where dementia or a mental health needs made it quite difficult. Universities love their acronyms and so it will be called the ‘HOPES’ study (as a shorthand… Helping Older People Engage with Social care.)

Many people with dementia and mental health issues, quite understandably, can be reluctant to allow strangers into their house. Home carers can often see this as them not wanting help and dismiss their reluctance, reporting back that they didn’t want to accept their care – end of. These people are then left without the social care needed because no one looks into the reason why……until a crisis occurs😔 With resources and visits being short, training limited, time is often one thing the home carers lack to enable them to build up trust and a rapport. The easiest solution is for them to be classed as -refusing sevices……

The study aims to find out what makes Specialist Support Workers in Community Helath Teams effective in encouraging older adults to accept social care….

So a very wet night was followed by an equally soggy morning and a grey world greeted me. A misty murk hung over the Humber as we trundled by

As we trundled further down the line towards York, the rain became torrential, fields were flooded, happy dogs accompanied by bedraggled rain soaked owners, heads down and possibly walking a tad quicker than normal……🥴

I was heading to York with their notorious sirens and loud unbearable noises so had my hearing aids in situe..but then….a beep beep in my ear signalled the batteries needed changing 😳….first time that had happened…..and never occurred to me to carry spares…..🙈..so it will be an ear piercing time in York….🥴 Alarm immediately set to put spares in my bag when I get home…🙄

Mark had told me to get a taxi to the uni, to txt when I arrived, and he’d come and get me and I had a nice taxi driver and saw the floods continued with the River Ouse overflowing….

Mark met me as promised amidst Freshers week with people more lost than me!!😂🤣

Also there was playmate Maria Helena and husband David, along with Mark and Louise, (researcher)….
David told us about Maria Helena’s, who’s from Columbia, her time with dementia…how point of diagnosis is a very lose phrase as no one knows when dementia started….it was a wonderful story and one I could have listened to for ages…….love to hear peoples stories❤️…I realised I know the lovely couple from Minds and Voices!

Mark started off

And explained what the project was about and how we can influence and contribute to the project.

The point at which people need care is different for everyone.

So we’re looking at those in later life, with dementia and also those with mental health issues. The department of health has recently become the department of health and social care, but the joined up working is yet to materialise. Social care isn’t free so getting social care is challenging from the start.

“If only the help was offered in a way that recognised and adapted to the person living with dementia”

maybe it would be easier to accept. Imagine someone undressing you when you didn’t understand fully what was happening – you may lash out or refuse – I would! A care worker might see the person as ‘being challenging’, simply through lack of training, in how to manage these situations

The crisis can then happen when the loved ones can’t cope with caring and a state of neglect or poor living conditions appear……simply through lack of understanding from the start.

Other people shape our identity……the steotypical image fills peoples minds and we suddenly become ‘a person with dementia’ instead of a mother, a person who worked, etc etc.

Specialist support workers, employed by the NHS work in complex care, are supervised by professionals. But there’s no evidence as to how they help people to accept social care. People have to be referred by the Gp but once again, post code lottery exists. They’re not qualified and registered – if you think of teacher and teaching assistant, these are the assistant, but they’re a bit more than that as they don’t work alongside a professional. They don’t have a professional status though.

I’d never heard of them but as with many things, they have different names in different areas…….in Humber, for example, they are ‘Support time and recovery workers,’……no wonder we get confused…..

They help people who don’t want social care not to fear it – so that is where this research comes in….we need to find out what makes people happy to receive social care through the interaction of these specialists support workers.

We want to fill those blanks on the chart…

We’ll do this through interviews with people, home care providers, specialist support workers and also have focus groups with people who supervise support workers.

I asked does the system break down once the specialist worker overcomes the fear of the person, is the person transferred back into ordinary social care system and collapses once more? – this is what we want to find out. In theory there would be a handover but does a care worker listen and take notice or does it end up back to square one?

Me and David contributed with soooo many questions and suggestions…..it all started to get very exciting about us being involved with the ethics committee, with focus groups, interviews and evaluating data…..but that’s me getting carried away in the excitement….

Many research applications are pie in the sky, the ideal situation and I stressed the need to be flexible and getting this over to ethics. How, yes would would like to be involved in many ways but we have to be realistic and so have a reality check on involvement as well, which may change as the study progresses.

After lunch, Louise went into the approach process – and we were shown the information sheet to comment on ……..we preferred the one that was set out with pictures instead of just words….and I said how I love research but I hate getting the information sheet with so much detail…and I brought up the feeling left when the researcher disappears and we’re left with the endless sheets of paper, all official looking if words only – if it’s official looking and just with lots of writing we might worrry about what we’ve signed up for. If it was friendly with images we may feel less stressed.

Sooooo many good ideas, issues highlighted and suggestions given. Louise asked our advice for how to start the interview. I said setting the scene is the most important part of the meeting – a friendly person, establishing rapport is far more important than asking the questions straight away….

Another fabulous study to be involved in….. Maria Helena is at a later stage than me but her gentle husband, David, is wonderful with her. Maria Helena shared laughter and made her presence known and shared hugs and chatted, lapsing into her native Spanish. She told me off for calling her Maria – ‘Maria Helena’ she told me and quite right too! She kept hugging Louise and saying how wonderful she was. That was Maria Helena’s contribution – Louise would be carrying out the interviews and her warm friendly disposition appealed to Maria Helena. If she hadn’t had the right character she may not have got that response. …Just because people have lost full power to communicate, doen’t mean they can’t communicate, can’t contribute. Maria Helena communicated loads in HER way.
It was lovely having her there which made the group photo even more special

Us as experts by experience bring something extra to the table. The academic experience and the expert by experience partnership is one that can only make research better……

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

11 thoughts on “Why acceptance of social care need isn’t always a given…..

  1. Dear Wendy

    Thank you for your blogs. I always look forward to reading them. They are invariably not only interesting but also contain useful little nuggets of information or advice on how to help everyone living with dementia. Long may you continue to blog.

    Liked by 1 person

  2. Really interesting post Wendy…I’m just learning about the importance of effective communication through an OU FutureLearn course as my partner has FTD dementia. Facial expressions and non threatening postures are so important, I try to put myself in his place and think how I would feel.

    Liked by 1 person

  3. Hello Wendy,
    It was very interesting reading your blog today as my daughter,Sarah, has just taken up a job in mobile care. Whilst she enjoys visiting clients, the one thing which frustrates her the most is the lack of time which is allocated to each visit. After doing all the jobs she needs to do, there is no time to have a chat with people and so, like you said before, no time to build up the trust and rapport.
    Wouldn’t it be great if everyone could access really good social care.By that I mean the care which meets all their needs, not just a quick house tidy, body maintenance care but an holistic
    type of care.
    I’m in awe of the work that carers do, of the types of care they provide. Just think how brilliant they would be at making a difference if they could have more time to do it.
    Keep up the great work you are doing Wendy
    Take care

    Julie Shearn

    Liked by 1 person

  4. Morning Wendy, I’m new to Twitter and have been following your blogs since I read your book which was inspirational but having just read yesterday’s blog re social care I believe this goes across all those elderly people who have lost loved ones or like my father is now on his own as mum is in a home due to living with dementia and dad managed v well for 4 years but it made him ill which is when we had to make a decision to put mum in a home but that has meant loneliness for Dad and as you say he does not want to let anyone in to his house to help him as he is beginning to struggle. We do as much as we can batch cook so he has a nutritional meal every day have him to stay every other week when we bring my mum home for the day and shower, wash her hair, manicure etc make her feel good but there is only so much family can do as we have jobs and our own lives to live so I for one support any improvement in breaking those barriers down, thanks for sharing and keep up the good work it’s so inspiring reading your blogs.

    Liked by 1 person

  5. A couple of points having been a professional carer. I am afraid that you have fallen into the trap of using the word “communication” to primarily mean verbal communication. Non verbal communication is just as important, you do have to know the signs, hence trng; I actually got mine from a private care provider, none really from LA. A well trained carer should be able to go into a “challenging” situation and work with the user. “Challenging behaviour” is normally the person trying to communicate distress, the reason should be found. I think that is what you are saying, so I agree with you!

    Liked by 1 person

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