Stress as Experienced by People with Dementia

Barbara Sharp PhD, BA (Hons) Lit, PG Cert. Research Methods,

RN (Adult), RSCN, Nurse Practice Educator.

Why this study?

Voice of people with dementia not heard on subject of stress.

How was study conducted?

• Learning through listening to the accounts of people with dementia

• Focus groups – recorded and analysed

Results – 5 themes

Something's torn - your life's torn Families can bring stress The stress of living with dementia A whole new set of rules It's our lives and we're going to get it under control ourselves

Something's torn - your life's torn

• ‘I’m doing my best to keep myself under control … I hope they (friends) haven’t noticed I’m changing ' (Anthony)

• The effort involved in trying to keep things ‘normal’ in the face of so many changes is exhausting.

• I’m not able so far to accept, em, that I’m not the person that I was – because I’m not.' (Sandra).

Stress relates to altered perception of self, roles, relationships abilities and futures.

Families can bring stress

• 'It’s like handcuffing you with emotion. You know, you can hardly breathe sometimes and that brings a lot of stress.' (Ian)

• ‘They don't mean to bring you stress‘ (Robert)

• '... she won’t leave me alone to sort things up the way I want to … and I think she’s being too protective … that can be very annoying. When you feel, everything I’m doing now is wrong. There’s no intention in being that way but...' (Anthony)

The stress of living with dementia

• ‘…not knowing is worse than knowing – keeping it from us is, I think, a sin beyond anything …(Arlene)’

• 'Yeah, your visual perception is different and it’s not until quite late on that you realise that it's different cause everybody thinks what they are seeing is what everybody else is seeing ‘ (Ian)

A whole new set of rules

• 'You get this indecision – like we say, when you’re trying to cross the road – it will frustrate you now, whereas I would see it as normal, Arlene would see it as normal, Robert would see it as normal.' (Ian)

It’s our lives and we’ll get it under control ourselves

• I'm still the same person • I'm going to do this • Something strengthening, other people

can help • It takes time • Starting a whole new book

• '...how I coped with my life is the past is also how I coping with it now because I’m still same person – I haven’t become somebody different or somebody new – I’ve just got an extra problem to deal with.' (Ian)

Recovery in dementia• Self-esteem• Purpose• Value• Function• Activity• Reciprocity• Hope