Positive Outcome Measures Research

Friday saw a visit from Lauren from the local clinical research network team as I’d agreed to take part in another study.

The week had felt a busy one, so it was nice to have Lauren come to my house so I did’t have to go anywhere.

I’ve said in the past how I love to be involved with students as they can change how dementia is portrayed in the future. They’re also like a sponge soaking up everything you say. So the reason I said yes to this one off interview is because it’s part of a students PhD project – Charlotte from the UCL – is trying to understand how personal strengths contribute to well being. Things like hope, independence ,resilience and how they can impact on quality of life.
2 new sets of questions have been developed and they’re being tested to compare to existing questionnaires
The questions were all around how you feel about yourself and your situation.

I assume and hope that Charlotte will get feedback from people with dementia around the questions as I’m sure this will provide extra evidence and thoughts around the type of questions we’re asked and the effect they have on us when answering……….

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A lovely way to end the week……..

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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.

6 thoughts on “Positive Outcome Measures Research

  1. As always I really appreciate reading your posts, as I am a Volunteer Befriender with the Alzheimer’s Society. ‘My’ lady definitely has a sense of humour and a substantial contribution to make. We played Scrabble today and she was awesome – moral of this and what you often say is never to underestimate anyone – diagnosis or not!

    Liked by 1 person

  2. Very interesting research study you are participating in. I love what you are doing including your blog which I follow on a daily basis. of cognitive

    Any news on your appeal for your independence payment?

    You come across as very positive, but speaking as a son whose Father has been suffering from Alzheimer’s, he has a positive attitude but the disease in itself affects this. He struggles losing his independence, gets very frustrated with memory problems, and has anxiety and depression.

    Could I also ask how you have found others such as family and friends are with you since your diagnosis and also if you feel if they have changed towards you.

    For myself and my Mum as carers, though we don’t like that word carer, we tend to get very frustrated with my Dad that he is unable to do some of the things he used to be able to do. Even though we know it is not his fought, it can affect our patience. Not easy dealing with loss.

    Best wishes,

    Martin

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    1. Hello Martin – thank you for your lovely comments. No letter from the PIP people yet – I’m sure I’ll blog when I do.
      My daughters are wonderful and we now focus on what I can do instead of what I can’t do – an example is I can still potter in the garden so I tidy my daughters as well. There’s really nothing we can do for the things we’ve lost but good to find new or different things.
      Best wishes to you and your family😊

      Like

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