Living with dementia: making a difference through research. Professor Bob Woods Dementia Services Development Centre Wales Bangor University firstname.lastname@example.org. Welcome back!. 2011 – What can we learn from people with dementia? 2012 – Dementia supportive communities
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Professor Bob Woods
Dementia Services Development Centre Wales
In the UK, for every person with cancer, £291 is spent on research; for dementia £61 is spent.
monthly maintenance sessions
Reminiscence groups for people with dementia and their care-givers: pragmatic 8-centre trial of: joint reminiscence and maintenance v. usual treatmentISRCTN42430123
Often assumed that care home residents with severe dementia are lacking awareness of what is happening in their environment, especially where no longer able to express awareness through verbal communication.
BUT still possible to identify signs of retained awareness by carefully observing the resident’s behavioural responses to his/her surroundings.
The idea of life story books or ‘This Is Your Life’ type scrapbooks has been adapted from child care work (Gibson, 1994).
The story book, itself, is created by the person, using the person’s choice of pictures, props and words.
The life story book is a pictorial reminder of an individual’s life as directed by the individual.
The book include the items the individual chooses as important to him /herself.
The caregiver can contribute by providing pictures and memorabilia from which the individual can select
“My childhood life was very
hard...difficult.... Once at age
of 14, I ran away from my home
and tried to join navy...they
found out about my age...I was
too young to join navy at that
time...the navy people send me
back home...my father got mad
with me” – James laughing recalling his memory; 2nd Feb 2011
“My wife and I loved our Malta holiday. Out of all our holidays...Malta holiday
was the best...we really
enjoyed...except the mosquito bites... (laughing)! - James
Mary and James – Malta Holiday
This is John’s wife Emma. The photo was taken before they got married. They used to cycle (push bike) together. John used to cycle 20 miles from _________ to ___________ to meet Emma on the weekends. He stayed at his mother-in-law’s house at No. _____________.
From John’s LSB: Page 8
John with his brand new motorbike. He was famous among his friends as ‘JOHN MOTORBIKE’. Only John had a motorbike among his friends. He is a Big Gun!
After this motorbike he bought his first car.
This little car had 3 wheels and was red in colour.
- From John’s LSB: Page 10
___ Carnival was a major part of Sarah’s life. She actively took part in
many events and activities in ____ Carnival throughout her life.
Above: Sarah was crowned as ____ Queen in ___ Carnival in the year of 1933. She was 11 years old.
-From Sarah’s LSB: Page 7
52 years later, Sarah was crowning Queen Carol, ___ Carnival queen in 1985. Sarah was 63 years old.
-From Sarah’s LSB: Page 38
Sarah’s main interest was baking and decorating cakes. She is highly talented in decorating cakes. Many people were impressed with her creativity and skills in baking and decorating cakes. Above, some of the cakes baked and decorated by Sarah.
-From Sarah’s LSB: Page 33 & 35 (Hobby Segment)
John’s feedback during life review session:
Emma (resident in another care home) looked very pleased with her husband’s life story book...kept saying ‘thank you’ every time turning to a new page. She recalled many memories and stories from her husband’s life story book. She enjoyed them.
Daughter’s feedback about her mother:
Reduced repetitive talk from her mother (Emma)
The book helped her (daughter) to engage in meaningful conversation with her father & mother
The book (LSB) helps to talk and bring many stimulating memories between daughter and her mom, Emma.
Now each visit...we can talk about meaningful things....
I only started to work here (care home) for past 1 week but I know one person very well. Like I know him for many years. Do you know why? The book!
‘Now I know what she likes...baking cake’....next time I know what topic should I talk to her...about cake! – Care Home Staff.
‘Now we know more about her....good job’ – carer
This book should be created and brought together with the resident when they move into a care home’- Deputy Manager, Care Home.
“I never thought that I had wonderful life...This book tells about that” – Participant
“Only now I know that I had so many holidays.... Can you believe..!
You see (referring to her book), I had so many beautiful dresses...sometimes my daughter borrows from me!
The book tells story of my father with pictures...his own words inside the book ... I will keep the book for his grandchildren and great grand children...They will be proud of him!
Life review group, who received life review as a treatment, significantly improved on quality of life compared with usual care group (gift group) who received usual care at first 12 weeks, F (1,20)=5.11, p<0.05).
However, after usual care group participants received their own life story book as a gift, their quality of life scores increased 3.1 mean points compared to time 2 quality of life scores, F (1,20) = 0.08, p>0.05).
Life review group increased ability in recalling autobiographical memory about themselves at post-intervention (Time 2), indicated significant intervention effect on total AMI scores, F(1, 20)= 19.92, p<0.01).
* However at follow-up indicated no significant intervention effect on AMI total scores. After having life story book developed by their relative as a gift, participants’ total AMI scores improved, F(1, 20)=2.92, p>0.05).
Participants and relatives enjoyed the process and the outcome of the book.
No kind of negative effect reported or observed.
The entire 11 participants enjoyed taking part in life review process
Life Review process produce psychosocial benefits (QOL, AMI) for people with dementia & the book acted as a ‘maintaining tool’.
The life story book created either by the life review process which is involving the person with dementia or by family members without involving the person is itself viewed positively by participants, relatives and care staff.
The creation of life story book appears to be a valuable therapeutic approach to aid a person living with dementia.
5/6 participants showed improved quality of life.
5/6 participants showed improved autobiographical memory.
All participants showed improvement or maintain depression scores.
Enjoyment, Excitement & Happiness
e.g. -I feel like I’m famous. I feel very happy to watch it!
-I enjoyed. I have tears…you see!
Stimulating & Triggering
e.g. -Its bring back my memories…I remembered that I love to play golf!
-I can see my life again…I remembered many things that I never able to remember. The movie tell about myself…songs and ballet make me happy.
- Helped me to spend good ½ hour with____. Very productive and not like before.
-At least for ½ hour my brother happy
2. Feel Good, Better & Pleasure
- Make me feel better because _____happy by watching the movie.
- I’m glad that I helped ____ to leave her legacy
-Pleasure in seeing photos of mum’s life; obviously it covers some of my life too.
Improved knowledge and understanding
-I got to know more about_____ and her family even though I have cared for her ten years and know some family members, still learnt a lot from the movie.
-Its helped me understand_____ more. Their past history makes them who they really are, and without information like this (movie), we really don’t know them
Out of 6 participants, 5 of them prefer movie over paper back life story book. One participant choose both.
Participants, relatives and staff view life story book as a useful tool.
There is indication that life story movie can be replacement to traditional life story book.