Need for personalised support…..one size doesn’t fit all…

Yesterday found me at a meeting at the local Alzheimer’s society offices in Beverley. Janet Woodhouse, Nurse Consultant, had set up a meeting for us to meet one of the 2 dementia support managers for the East Riding and Humber. Since moving to the area I’d lacked support from any quarter so we were here today to see what they could offer.

Janet kindly picked me up from the village and we were met with the offer of tea so the meeting started off well……..
I’d offered to be involved with the local office from the very start so was very sad to hear that no one with dementia had been involved in the latest interviews for dementia advisors.
I was sad to hear than no one with dementia is involved in the in house training, especially when I’d offered to be involved from the start. I’m involved a great deal with the head office but the local office sadly hasn’t involved me.

The only person who has involved me is Emma Williams – the amazing Dementia Action Alliance coordinator for the area. We have worked in partnership from the very start, yet she is due to leave at the end of October, when her contract ends, which will be very sad for me.
I feel I give an awful lot at the mo, yet receive little in return for my own benefit, so that was the reason for the meeting today. I need emotional support as much as someone else may need physical support. It’s one area that the society falls short at the moment in my area but hopefully, with the new rebranding and new outlook, this will all change. This is where it’s key for the new society strategy to be understood and implemented at regional and local level. Those in the early stages of dementia have very different needs to those in the later stages. Dementia cafes are fine for some but inappropriate for many. This is where ‘person need’ should be taken into account.

As always funding is the main issue and Kate only has 1 dementia advisor for the East Riding. I’m certainly not beating anyone with a stick – purely highlighting the shortfalls….
I met the advisor, Trish Ward and she scored a brownie point the minute she said:

“It’s through people asking for what’s not there that services develop”.

I’m asking for what’s not there – email contact with someone for support. I kept being told of ‘telephoning’ the office and ‘contacting by telephone’, but I, as an individual, find the phone difficult, so need a different medium. We have to change the mindset that everyone is the same and needs to same services and can contact in the same way. Many people, such as myself, live alone and may also find the phone difficult, yet would love support and to be involved in some way. Some people still answer the phone out of necessity, yet answer inappropriately as they are embarrassed at admitting they find it difficult or don’t realise they give the first answer that is the simplest to give. I realise the society is funded to deliver memory cafes and are measured against whether they meet these indicators, but they are not providing a true service if individuals needs are not met.

There’s a whole new type and generation coming along who are computer literate, who blog and use social media on a daily basis who may benefit from different types of services. I know, as many of them contact me via my blog. Kate asked me if I used Talking Point, but I don’t find this helpful for people with dementia in its current format.I believe it’s a good source of support for supporters but I find it disturbing as it’s so easy to navigate to see the supporters submissions. Today, the headlines were: “Dad came home today, I’m so scared” and the language is often negative and sad. Maybe a new form of dementia advisor could be a virtual resource and could Skype and use email as extra forms of communication. They would be available to anyone anywhere and not reliant on local variation of services.Dementia advisors should be given the skills to be able to offer many forms of communication.

Trish was full of enthusiasm and desire to fulfil the need I have so we agreed to give it a try. I’m not looking for an instant response to my email as that would be unrealistic. She doesn’t have much office time as her role is out in Gp surgeries and isn’t media savvy. I just want someone to be there to be able to reflect on a difficult day and help me solve issues as they happen. As many of us have said of late,

“Services should be evolved around us, not us trying to fit into existing services”.

Square hole, round peg syndrome me thinks…….anyway, let’s see how this works out. Trish had a lovely smiley face so we should get on famously….

After this was a catch up with Emma Williams. The East Rising DAA has it’s annual general meeting on Thursday so Emma was filling me in on the exit strategy for when she leaves but also about an exciting new project to be launched in September – that contains World Alzheimer’s Day on the 21st. . It’s a new photographic competition where people are invited to submit a photograph that has a dementia theme. After the winners have been announced there’s a plan to tour the East Riding and Hull to raise awareness through these photographs. Since Hull is the City of Culture next year, it’s fortuitous to exhibit at key places where tourists will visit or even at the railway station, where visitors will arrive. Really looking forward to seeing the winning entries.

I know some time back I did a blog of photos depicting my thoughts on dementia. Here’s my favourite image…..

I always liken a bad day to a knotted necklace......
I always liken a bad day to a knotted necklace……

You can see more at:

https://whichmeamitoday.wordpress.com/2016/01/15/dementia-through-pictures/?preview_id=2719&preview_nonce=1b9aa070b8&post_format=standard&preview=true

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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 “Need for personalised support…..one size doesn’t fit all…

  1. Wendy,
    I read your blog everyday, but usually don’t respond. I wish I were there to offer you additional support. I work for Alzheimer’s Arkansas, and we are all very busy trying to support those living with dementia and the caregivers throughout the state.
    Your courage and willingness to share your feelings and describe what is happening to you is admirable. Too often people think those diagnosed with AD don’t think or feel. When I hear comments like that I send them your blog.
    Please keep up the good work and consider yourself receiving an “atta girl” from me each day!
    Much love,
    Priscilla Pittman

    Liked by 2 people

  2. Dear Wendy
    I’ve shared this post on my Facebook page as I have others. I work for JohnLewis and we’re being given some training by Age UK Norwich on dementia awareness. I questioned them on whether someone with dementia would be there but was told no we’ll be watching a film!. I’ll see how it goes with your comments from your blogs in my mind. Keep up the good work. My late mum had dementia though we didn’t have a formal diagnosis. Warm wishes Sarah Ebelewicz

    Liked by 1 person

  3. Wendy I really like your blog, I am a new PhD researcher with an interest in nutritional care of people living with dementia at home. I am exploring how to provide help and support (from a nutrition perspective) when the person needs it and your views on potentially using technology to do this are interesting.

    Like

  4. Wendy, you are a good teacher for all of us who want to learn more about living with dementia and how we can help.
    I too have concerns about nutrition. My mother had many nutritional struggles, but I believe the swallowing study helped a great deal.
    Have you noticed a change in your appetite or perhaps food you crave? I read that when we are stressed we crave sugar, fat and salt. It is true for me and a signal that I need a reality check!!

    Liked by 1 person

    1. Food cravings are very different over the last year Priscilla – I only tend to crave savoury foods as sweet food, which I used to love tastes even sweeter now. Bizarre……As for swallowing – yes, sometimes it isn’t automatic any more and you have to remind the body what to do – another crazy effect of dementia sadly!😏

      Like

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