Dementia is only part of my life

My past and my present

When getting to know someone with dementia, the person’s past is really important.

The person with dementia needs to be able to describe themselves. You live your life according to what you’ve done in the past – memories are incredible important.

(Peter H)

It’s the same for all of us.

However, sometimes it feels like there is TOO MUCH focus on the past – and this can make people with dementia feel like their life is all about looking back, not forwards.

It makes me feel like my life is over – which it isn’t.

(Brian)

Focusing only on the past can make people feel that their present life is somehow less valid – and it can blind us to the person they are now.

You know, I always loved cricket – I always was a Gloucester boy – it was a real obsession. But you know, something has happened, and I just couldn’t be less interested. I can tell you that now of course – but if in the future you were relying on my ‘life history’ to tell you what I like then I’d end up getting dragged along to cricket all the time – I’d hate it. So talk to me, my life isn’t over yet.

(Brian)

My taste has changed, now I like curry and rock music!

(Ken)

Obstacles to living well

There are some things which can make dementia much harder to cope with. These include:

• other people with a bad attitude or poor communication skills:

People with dementia can feel inadequate when talking to others – people need to know there are lots of people with dementia out there.

(Peter H)

• other illnesses and sensory impairments:

I dread tripping over – I don’t walk as well as I used to – but that’s nothing to do with my dementia.

(Sandy)

• unhelpful or new environments:

You know, one thing that affects me really badly is background noise – I really find it hard to concentrate – I guess the dementia doesn’t help but it’s the noise mainly.

(unattributed)

I used to get lost – I still do – but I don’t care now.

(Sandy)

The feature on Having a good conversation in the section on Communicating well looks at similar ideas.

• Further reading Open

  Bryden, C. (2005) Dancing with dementia: My story of living positively with dementia. London: Jessica Kingsley Publishers.

  Morton, I. (1999) Person-centred approaches to dementia care. London: Speechmark Publishing.

  SCIE Dementia awareness e-learning course.

  Sheard, D. (2007) Being – an approach to life and dementia. London: Alzheimer’s Society.

• Useful links Open

  And still the music plays
  Professor Graham Stokes’ 2008 book shares the stories of 22 people with dementia and in doing so conveys that it is critical to think deeply about each person individually in order to respond well to their unique needs. Published by Hawker Publications.

  Dancing with dementia: My story of living positively with dementia
  Christine Bryden writes powerfully in this book about her experience of living with dementia, and argues for greater empowerment and respect for people with dementia as individuals. This 2005 book is published by Jessica Kingsley Publishers.

  Dementia Diaries
  The Dementia Diaries project involves people living with dementia keeping an audio record of their daily life with dementia. Contributions cover a number of themes: care and support, public perceptions, family and friends, living well with dementia, daily challenges, and policies and service provision. The project is the work of the non-profit communications organisation On Our Radar working with DEEP.

  Dementia: Lesley’s story
  This Alzheimer’s Society film features Lesley, who lives with dementia, talking about her life working with children, the work she continues to do and her many hobbies. This film is part of the Society’s ‘Remember the person’ campaign, which asks people to think about the individuals living with dementia and not just the diagnosis.

  The Life Story Network
  This organisation promotes the value of using life stories to improve the quality of life and wellbeing of people and communities, including people with dementia. Its website includes information about workshops and events, sharing practice online, and links to key resources.

• Related pages from this section Open

  • Getting to know the person
    • Impact of diagnosis (video)
    • Importance of memories (video)
    • My life is changing because of dementia
    • Dementia is only part of my life
    • Each person is different so get to know me
    • Helping me live well