In the shoes of … Norman McNamara (4) | Dementia Awareness Day, 15 September 2012

What are YOU doing at 3pm this Saturday?

Did you know that this is the date to mark Dementia Awareness Day? 3pm is the specific time to do something special – but this could be as small as talking to one person and telling them something about dementia. We challenge you, individually, to make sure that on Saturday you do at least ONE SMALL THING to help raise awareness of dementia and reduce stigma!

This “guest blog series”, looking at dementia from different perspectives, was started for ‘Dementia Awareness Week” back in May. We have now had over 60 guest posts and are thrilled at the response – both from the contributors and the readers and supporters.

In the series, we have included powerful posts by Norman McNamara, living with dementia. Norman and his friends in Torbay organised the first Dementia Awareness Day a year ago and Norman talks here about this year’s event.

To mark this event, I am delighted to post another contribution from Norman telling us about the work of the Torbay Dementia Action Alliance. I hope you will find it interesting to compare the different approaches being taken around the country to establish dementia friendly communities. The series does not set out to judge, just to share the learning and showcase innovative approaches. The approach in Torbay is certainly very action-focused! … 

Hello my name is Norman Mc Namara and nearly five years ago I was diagnosed with early onset Dementia. Since then I have campaigned long and hard to improve things for all those affected, patients and carers alike, and hope to do so for as long as possible.

Back in January I decided to found the Torbay Dementia Action Alliance and I am so pleased to say we have grown so much since. The documentation we are giving out to Businesses and companies are simple and direct. Also one of the documents was written by myself so you really do have it “straight from the horse’s mouth”, so to speak!! Our local radio website includes a list of all our supporters who have signed up and a photo of us meeting with government officials  – I am on the left to the Prime Minister.

Who Said It Wouldn’t Work??

The way we are running the Torbay Dementia Action Alliance has been discussed, dissected and yes, sometimes, even derided!!! Our approach of doing this from the bottom upwards without the need for “criteria, work streams, and being evidence based” is not welcomed by some who want to do lots of what they call “research” first to see what people with dementia and their carers need.

We have already done this by having people with Dementia and their carers on the steering groups and advising which way is best to approach this (SIMPLES !!) thus we have people (Volunteers) on the ground who are either living with this awful disease or have cared for people with it for many years. These are the REAL people who will make a difference. As you know we have taken the “Inverted Triangle” approach. This is quite simply where you turn the triangle upside down and allow those at the bottom to run the things that need running on the ground (those with the day to day experience) and then filter it up to those who need to know, and this in turn, hopefully takes a little pressure off the bosses!! LOL.

Norman gives an example of a week in early August 2012, as described on his Community Care blog, showing how their hands-on approach is helping people here and now…

Last week we signed up the local Wilkinson’s store here in Torquay and all the store staff were given the documents to read. Within days of this there was an incident. We heard from the Store manager to say a lady became quite confused and agitated as she was shopping. Because the store staff had read and understood the info given them by the TDAA (Torbay Dementia Action Alliance) they recognised the signs of Dementia, waited patiently and calmed her down, eventually persuading her to give them a phone number out of her diary so they could contact a member of her immediate family to take her home safely, and this is exactly what happened!!!!

She arrived home safe and sound!! Have you ANY IDEA how good it is to write those words!!!!

Let’s make no mistake my friends how important this is and what a benchmark we have made!!! This is what we dreamt of when we first formed the Torbay Alliance, this is what we all wanted to happen (as sad at it is that it does happen), and this has happened.

THIS PROVES WHAT WE DO WORKS!!!!
THIS PROVES THAT WE ARE MAKING THAT DIFFERENCE!!
AND THIS PROVES WE ARE ON THE RIGHT PATH!!

This also proves that sometimes, just sometimes, we don’t have to make everything in this world “PC”

All we want to do is to help people, make their lives better and improve their quality of life by communication and understanding of this disease where it’s needed, right at the heart of things, not in Tower blocks of offices and Boardrooms, but  RIGHT HERE AND RIGHT NOW!!!

I wouldn’t like to be the in the shoes of the person who turns round and says to all those fantastic, warm, kind hearted people of Torbay who have taken the Alliance to their hearts “Err sorry, you are not a Dementia Friendly Community” because you have not registered with us, or something similar, WOULD YOU???? LOL

This is without the best news I have shared for a long time and I am hoping you share it also,

All our Love, Norrms, Elaine and the Torbay Dementia Action Alliance

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About Gill Phillips - Whose Shoes?

Passionate about personalisation in health & social care. Creator of Whose Shoes? - an imaginative approach to helping people work together to improve lives. http://nutshellcomms.co.uk
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8 Responses to In the shoes of … Norman McNamara (4) | Dementia Awareness Day, 15 September 2012

  1. Trevor Plunkett says:

    Have just read Norman’s article and making people aware of dementia- from whatever cause. Do you know that doctors, health care workers and nurses on General words in any hospital have little or no training in looking after a patient with dementia? Furthermore, there is ACTIVE discrimination AGAINST patients with any form of dementia by PHYSIO_THERAPISTS who deny these patients physio re-habilitation purely because they have dementia. My wife walked with minimal help before her stroke. She was admitted to an acute stroke unit, BUT refused physio-rehab. after a minimum of physio contact. ” other patients that I know of, one with Parkinsons dementia and another with Alzheimer’s were also refused. So though my wife’s stroke recovered she was unable to balance or bear weight, and hence was unable to walk when they sent her home after 8 (EIGHT) weeks of being on an acute stroke unit. I am attempting to improve her balance and standing at home, ON MY OWN. She also lost 8Kg weight in 8 weeks in spite of eating- obviously not enough nutrition- and was classified as being “in danger of malnourishment”. This is almost negligence, I believe. I have her on a bodybuilding regime of chicken full cream milk and protein drinks.

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    • Whose Shoes? says:

      Thank you for taking the time to comment on the blog, Trevor. I am really sorry to hear this – you must be very busy looking after your wife, who is very fortunate to have your loving care and support. As you may know, this is part of a series of “guest posts” looking at dementia from different perspectives. If at any point you would like to tell your story in more detail, I would be very happy to feature it as discrimination (age, dementia) is an area we have not previously covered and I’m sure there is huge learning for all parties. As well as the human aspects of the story, promoting independence and minimising time in acute hospitals saves vital NHS resources. Also the “vicious circle” of malnutrition and the simple steps that can help (which you are doing!) are something we have covered in the excellent post about nutrition by Sheila Merriman. Whatever you decide about this, I wish you and your wife every good wish for the future. Gill

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  5. Hi Norman,
    I was researching articles on dementia again as i have just uploaded a video of my mother in law and have been trying to make awareness. thank you for you blog, heres our story: I have now uploaded to youtube, thank you everybody for sharing so far: http://www.youtube.com/watch?v=Ea0Yyu-z4ow&list=UU_Z8BX4FURZoHJj6zZOlYpw&index=1&feature=plcp

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  6. belleagain says:

    Reblogged this on tobetternessandbeyond and commented:
    I came across this blog tonight whilst researching early onset Alzheimer’s for my NaNoWriMo novel. I have experienced this cruel disease through my stepfather’s line of work and think Norman is an absolute inspiration. What a fantastic attitude and incredible resolve to help others in his situation to have a better quality of life. I’m literally moved to tears.

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  7. I have written a children’s book to help explain dementia/AD to 8-12 year olds. I felt the need after seeing a 10 year old upset her grandmother by rudely saying, “Grandma, you have already said that three times” and see her grandmother face just fall. So sad. I thought someone should have explained to her what was going on, what to expect and how to act. So I decided to write the book. Although I wrote it as educational, it was won awards as entertaining fiction. It is called “Green Kitty” and revolves arounds visits to a grandmother who is in early stages who loves to tell family stories about animals and pets.

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