Pathway towards person centred care - upholding personhood

Ponnusamy subramaniam

*In 1906, Alois Alzheimer described an unusual disease of the cerebral (plagues and tangles)

108 years…………

PUBLIC VIEW!!!

Dementia sufferers 'not treated like thinking human beings' – Northern Ireland BBC report

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Hypercognitive Culture

• I’m still a person • I’m still can enjoy my life

• A person is still a person despite the loss of memory and other cognitive functions (e.g. Brooker, 2007; Dewing, 2008; Kitwood, 1997).

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• Many abilities and capacities do remain.

• Emotional sensitivity and spiritual awareness

• Reporting good quality of life

• Able to have fun/enjoy, engaging in activities

• Continued meaning in life

Many researchers have suggested that a person with dementia still has the ability to have a good quality of life, enjoy life and maintain functional abilities.

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-1997, Dr Tom Kitwood introduce

person centred approach in Dementia

care.

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• The idea of person centered care triggered a major shift in dementia care culture.

• First time placed the person with dementia in front line of care.

• Care workers need to view the person beyond the clinical disease

• In other words, the person is the main focus and not the person’s illness, which is dementia.

“Personhood is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being”

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The condition of a person with dementia is influenced by various factor;

• Dementia presentation (D)= Personality (P) + Biography (B) + Health (H) + Neuropathological Impairment + Social Psychology (SP).

• D = P + B + H + NI + SP

Personhood model emphasis the importance of relationships and interaction in enhancing a person with dementia’s enjoyment and in upholding their personhood.

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AIM • The aim of personhood is to recognize the

uniqueness of a person beyond his or her illness, the dementia.

* In order to maintain the personhood, a care environment should provide;

• negative behaviours that are the opposite of personhood and cause harm to persons with dementia – this is described in terms of ‘depersonalizing tendencies’.

• negative interaction and communication patterns diminish the personhood or are not supportive towards the personhood.

• intentionally or unintentionally due to lack of awareness.

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• The depersonalising tendencies can create a devaluing environment, which includes 17 ways of interaction with the person with dementia and their environment: disempowerment, treachery, infantilisation, mockery, disruption, withholding, imposition, ignoring, objectification, banishment, invalidation, disparagement, labelling, outpacing, stigmatisation and intimidation.

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According to Brooker (2004) person-centred care has four essential elements:

• Valuing people with dementia and those who care for them (V)

• Treating people as individuals (I)

• Looking at the world from the perspective of the person with dementia (P)

• Providing a positive social environment in which the person living with dementia can experience relative well-being (S).

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Therefore the idea of person-centred care (PCC) can be expressed in terms of =

V + I + P + S.

A positive care environment created according to the person-centred care concept will enhance well-being for people with dementia.

• Do my actions Value and honour the people that I work with?

• Do I recognise the Individual uniqueness of the people I work with?

• Do I make a serious attempt to see my actions from their Perspective or stand point?

• Do my actions provide the Support for people to feel socially confident and that they are not alone?

THE WAY TOWARDS PERSON

CENTRED CARE

• The person’s biography is seen as being an essential component of the presentation of dementia (Kitwood, 1997).

• Biographical approach, such as life story work, and the psychosocial aspect of the life experience of persons with dementia is strongly associated with a person-centred care approach (Sabat, 2001).

• One-to-one life review sessions can be viewed as

an individualised approach that supports

personhood (e.g. Haight et al., 2006).

• In order to understand a person with dementia, the

life review method should be adopted as a

tangible aid for facilitating the construction of the

life story (Woods, 2001).

• LSB also directly helps to preserve the

identity of persons with dementia.

• The carer can recognize the ‘self’ of the

person with dementia by practising the person-

centred care approach (Kontos & Naglie,

2007).

SHORT TERM MEMORY Vs. LONG TERM MEMORY • Usually person with dementia has more

difficulties in recalling recent events (short term memory).

• Long term memory usually remains intact for many years after the initial diagnosis of dementia.

• The remaining ’healthy sections’ of memory provide scientist an opportunity to explore and develop strategies to maximise the functions of older adult with dementia.

EXAMPLES OF LIFE STORY WORK

*Ann went to __________ school in ________. After Ann completed her primary school, she went to ____________ school.

PICTURE DELETED! Ann’s class photo – she was in year 4, 1934 She is in the second row standing fourth from the right. - From Ann’s LSB: Page 5

*After she left school Ann worked in the Navy, Army, Air Force Institutes (NAAFI) cafeteria.

PICTURE DELETED Ann (1st on right) in 1948 at Llanbedr, she was 22 years old - From Ann’s LSB: Page 20 (Career Section)

Ann married in _____ Chapel, ______ on September 1954, when she was 28 years old. Her husband’s name was_____. Ann used to call her husband _____. The bridesmaid was Ann’s sister ____ and _____, ____’s brother, was best man. -PAGE 34

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PICTURE DELETED! Ann has 5 children, 3 boys and 2 girls. From left: ____,____, ____,____ and ____ (not in this picture). Ann was very good at knitting – her boys in this photograph are wearing jumpers made by her and her daughter ___ is wearing a cardigan - PAGE 39

PICTURE DELETED From left: Ann (third) and her sister _____ (last) Then, Ann worked at a local primary school (_____ School) as dinner lady. Later, she worked as a school cleaner until she retired.

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PICTURE DELETED Despite being busy raising five children, Ann always found time to knit and sew. She knitted jumpers and cardigans mainly for her own children and nephews and nieces. She always had a knitted garment for all the newborn babies in her village. She always loved embroidery – until arthritis prevented her from sewing. Samples of her work can be seen at her home even today.

- From Ann’s LSB: Page 29 & 31 (Hobby Section)

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*Example of Ann’s work

PICTURE DELETED 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!

- From John’s LSB: Page 22

PICTURE DELETED!

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At the age of 14, Mary started to work at Hancock and Wood in Chester. Her role was as a model, showing clothes by wearing them for others to see. Later she worked in the hat department, modelling hats and other clothes, coats, suits etc.

PICTURE DELETED

PICTURE DELETED

PICTURE DELETED

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Life Story Book: The Possible Psychosocial Benefits

Stimulate Memory & New information Improve staff knowledge Improve Interaction & Communication

Promote Person Centre Care

Entertaining & enjoyment

Living Legacy Help understanding & managing

behaviour

View & evaluate own life

LIFE STORY BOOK

1. This is about me...I’m excited...now, people will know me... great!.... dear me...dear me!.

2. “Oh wonderful!...you bring back all my memories...nice to see them again! - Cathy

3. I only start to work here (care home) for past 1 week but I knew one person very well. Like I know him for many years. Do you know why? The book!

1. My father enjoyed.....for long time he never laugh like this....

-Now each visit...we can talk about meaningful things....

-The book is great idea.....it is very useful... very stimulating

2. We enjoyed very much throughout the project....we enjoyed each sessions....after each session we looked forward for another session...thank you very much.

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•‘This book should be created and bring together with resident when their move in to care home’- Deputy Manager, Care Home.

•‘Now I know what she like...baking cake’.... carer.

•‘Now we know more about her....good job’ carer

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LIFE REVIEW PROCESS WITH PEOPLE WITH DEMENTIA

Gwen’s mother

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“My childhood was poor...I lost my mother at age of 10...my elder sister, Elizabeth, left school after mother died....she took over the house. After mother passed away, we three children moved around to different relatives’ houses...one of that was Uncle Now and Auntie Ella’s house” ... Gwen

School Netball team

“I’m quite short to play netball compare to my teammates. But I move fast...really fast...I’m good...I’m in first team for my school” - Gwen

Jennie standing next to Miss Murr

Husband

“I met my husband for the

first time when I was 19

years old at the beach in

Pwllheli.... very handsome

man” - Jennie

“The best part of my life is

when I met my

husband...he is very nice

man...we had wonderful

life” - Gwen

“We had a very happy life...he died too soon...I wish he lived longer...little longer!” - Mor

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“When I look back at my life (long pause)...I have no regret...all looks fine...I’m happy...no need to change anything...only one thing...my husband...he died...what I can do...can we do anything... Overall I’m happy with my life – Mor.

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“When I look back at my life...I’m happy about my life. However my first marriage was horrible. The first 2 years of my 1st marriage was nice but after that things changed from bad to worse” – Megan assessing her overall life.

Poem written by Megan

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PICTURE DELETED

“In whole, all the sessions (life review process) make me feel good. I’m happy to take part in this research” – Renee, 25th August 2011

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Example of Life Story Movie

(JAMES’S MOVIE)

1. 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!

2. 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.

* 1.Quality Time - 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 left 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

“I moved to a new room (from ground floor to first floor)....first night at that room, they (care home staffs) gave me 3 pillows.....at midnight all the pillows fell down and my neck was very painful...I tried to get the pillows....but after lots of efforts, I managed to get one pillow....that is my determination....only determination will bring us forward....”, Megan (13th May 2011)

PERSON CENTRED CARE IS PRODUCT OF OUR ATTIDUTE AND INTERACTION (RELATIONSHIP) WITH PERSON WITH DEMENTIA

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It’s Important to Know What Disease a Person Has, But It’s More Important to Know What Person the Disease Has.

---- Dr William Osler