Dementia can bring a lot of changes to a person’s life. Working on a goal can have a positive impact, providing a focus and making a person feel more confident and in control. My Life, My Goals is a self-help guide created for people in the early stages of dementia by people with dementia and researchers.
People with dementia often feel happier when supported with daily activities and things that bring joy to their life. It's not always necessary to stop doing these things after a dementia diagnosis; they may just need to find different ways of doing them.
A person living with dementia in the early stages can benefit from a practical strategy that works for them as an individual. A care partner might be able to support problem-solving and help develop the strategy.
My Life, My Goals is a self-help guide designed to help people living with dementia, step by step, try to achieve their goals.
Helping to create My Life, My Goals - Allison's story
Allison lives in Dundonald in Northern Ireland. She is 61 and was diagnosed with dementia in 2017. Allison has been part of the project team creating My Life, My Goals.
My Life, My Goals is perfect. It tells me that my life is important and I can take control. It’s my life, it’s my goals.
'Dementia takes so much away from you. I came away from being given my diagnosis thinking my life was over. You are handed a lot of leaflets and information, but it is very medically based. It’s very daunting stuff. If I had been given My Life, My Goals I would have been given hope.
'Having goals is very important because you can see yourself being able to do something. My Life, My Goals is full of ideas and strategies from people who have a dementia diagnosis and they’re telling me I can do some of this stuff. I might not be able to do all of it but I’d be able to do quite a bit of it, with a bit of planning.
'You feel a real achievement. It builds your confidence to try something else.'
A passion for cooking and baking
'Cooking was my main thing, I loved cooking, I loved baking. The only way I can do that now is to be exceptionally organised and to work from a recipe. I can no longer remember things that I have made all my life, but that’s fine, it means I can still do it. Whenever I’m cooking something I quite often forget to put water in the pot. So that is an important part of every step I’m doing - if there’s water it has to be on that list!
'My Life, My Goals is personal to you. You don’t have to read it cover to cover. You can dip in and go to the sections that you need.
'Goals that are important to me might not be the goals you would choose. Nobody else is saying what I have to achieve or what goals I have to set.
It’s my life. It’s not my husband telling me what goals I need to set. He can help and prompt as well but the important thing is it's my life and these are my goals.
'Setting goals, even if you fall slightly short of a goal, in quite a lot of cases you will achieve and even go beyond it. Some people might say, "Well if you set goals, and then you fall short you’re disappointed and de-motivated and lose more confidence". But I think it works as long as you’re realistic and you’re not expecting to do something that you’ve never done before.
'This booklet might help you realise you have already put some of these steps into place. People who haven’t put them into place yet can be guided on how to start the process.
'Maybe start with something really simple, something you know you can achieve easily and see how these steps help you do it better. It will be a good guidance and a good prompt for people to actually start.'
About My Life, My Goals
Who created the My Life, My Goals self-help guide?
Alzheimer’s Society funded an implementation project called GREAT into Practice (GREAT-iP) to support the researchers from the GREAT trial, led by the University of Exeter, to adapt their cognitive rehabilitation therapy to real-life practice.
Together with people living with dementia, they created the self-help guide, My Life, My Goals, to enable other people living with dementia to set and achieve goals.
What is the GREAT dementia research trial?
GREAT stands for:
- Goal-oriented cognitive
- Rehabilitation in
- Alzheimer’s and related dementias: a multi-centre single-blind randomised controlled
The trial demonstrated that people with dementia were better able to achieve their goals in every-day tasks if they had received goal-orientated cognitive rehabilitation therapy. That’s why the Society funded GREAT-iP, to put GREAT ‘into Practice’.
What is cognitive rehabilitation therapy?
Cognitive rehabilitation is a type of therapy that can make managing everyday activities easier for people with early-stage dementia.
It is often delivered over several sessions between a therapist and a person living with dementia. The therapist will help the person living with dementia to plan how to meet their goals and will support them to do so.
Several studies have shown that it can help to maintain independence.
Watch a two minute video that explains cognitive rehabilitation:
How will the self-help guide benefit people with dementia?
The dementia researchers identified that not all people with dementia were able to access a therapist to receive cognitive rehabilitation therapy.
They also found that some people who were recently diagnosed with dementia were able to identify their own goals and strategies, but might benefit from support to do this.
The people with dementia who helped create the guide wanted other people living with dementia to feel hope.
Hope that are ways of managing any difficulties, hope that there are solutions to problems and hope that people living with dementia can live a good life.