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Evaluating Life History Work Education
- 1. Alan Beasley MSc Dementia Studies “This is Me” Evaluating Life History Work Education for health professionals working alongside people living with dementia and family members
- 2. Life History Work…But Why? Enriched Model of dementia Dementia = NI + H + B + P + SP NI = Neurological impairment H = Health and physical fitness B = Biography / Life history P = Personality SP = Social psychology (Kitwood, 1993)
- 3. Question! Life History Work + Education Evaluating life history work education provided for health professionals working alongside people living with dementia and their family members
- 4. Methods •Provide a pre-and post education evaluation Likert rating scales/questionnaire for a group of health professionals whom work alongside people living with dementia and family members •The health professionals then attended a focus group 4-6 weeks following the life history work education •The facilitator has further undertaken individual semi-structured interviews with three family members of people living with dementia who had been engaged with life history work
- 5. Results Pre and Post Education Evaluation Scores (rating confidence, knowledge and ability)
- 6. Results Pre and Post Education Evaluation Scores (rating confidence, knowledge and ability)
- 7. “I See You” (Focus Group-Health Professionals) “I put photographs of her when she was a little girl, then also as a woman. Sometimes, when I see the healthcare assistants looking at her pictures they say “oh goodness me is that her?”
- 8. “I understand you” (Focus Group-Health Professionals) “We have to fill in behavioural forms at work and it looks at why the behaviour could be happening and now I use this to describe why she may appear to be “bossy”, but in actual fact she is just caring and wants to make sure that everything is working well. So looking at how it works within her mind and what she feels”
- 9. “You hear me” (Focus Group-Health Professionals) “She said that was the first time she really felt like someone was listening to her. She hadn’t felt like anyone had been listening to what she had to say and then she recognised all of a sudden she’d known him for many, many years and what she has to say is important” (health professional)
- 10. “This is me” (Focus Group-Health Professionals) “Self-esteem can be enhanced once your profession and trade is acknowledged. When we had an art group the other day we had a gentleman who taught the group how to hold a paint brush as he had been a house painter. So we were an art group but he was painting his house. He showed the ladies how to do those strokes and it was wonderful”
- 11. “Bring to life my life” (Focus Group-Health Professionals) “She takes things out of the memory box and then she looks at it, not always with any great recognition or anything and its mainly photos really. Even if its just five minutes it doesn’t matter you know it works. Put her in front of those the life story collages and wow, she loves them”.
- 12. Life History Work…Works “So I think in dementia it should be individualised and one way we can do it is through life history” “It just amazes me how I look at the residents differently after the life history education, because finding out what they did in the past, you know I take my hat off. They have done so much in the past and if we know the life history we can still carry on. Somehow we can still touch some parts of their memories, probably they can still recall if we are just aware”
- 13. Life History Work…Works “It’s to give them that spark of life each day to make their lives that little bit better and if that little glimmer of information can help to get them through the day” “So I think in dementia or any level of care it should be individualised and the only way we can do it is through life history, we should know more about them. So its stops us thinking everyone can do painting, well not really, everyone can do gardening, well not really, no”
- 14. “I’m so proud of mum” (family members-interviews) “I think it helps them to get the feel of the patients past history and life story, with regards to their employment, recreational and educational past. Just because you’ve got early onset Alzheimer’s doesn’t mean to say you’ve lost everything, they remember lots” “We quite often play badminton or I’ve got a basketball she used to be a basketball coach so she knows all that and she’ll talk about that and craft classes and all that”
- 15. “Remember me…I’m here” (family members-interviews) “I’ve got notes all over his wall, “please do not do this…if he gets upset walk away…make sure he’s got his music off” “She really enjoys her time out when we talk about things like that so I try and find a subject that we both enjoy talking about that’s been maybe in our past and that we can talk about together. She’ll talk for 20 to 30 minutes, so that’s great”
- 16. Life History Work is the future! “I think when we work in this kind of setting, knowing about the life work it actually tells us who the person is behind the dementia. I feel the dementia is just a wall and their life history is all there it’s all rich and you just have to get to see it. We all work together to see what the whole person is, that’s what it’s all about”.
- 17. THANK YOU Any questions, advice or opinions then please feel free to contact me Alan Beasley Dementia Educator Canterbury DHB Alan.Beasley@cdhb.health.nz Cell: 0275913583
Notes de l'éditeur
- In response to this increasing number of people living with dementia and the need for service improvement (ADI, 2015), many countries have developed coordinated strategies of care and support. The Department of Health (DoH) in the UK puts forward in its very first objective of the National Dementia Strategy to, “improving public and professional awareness and understanding of dementia” (DoH, 2009, p.11). Here in New Zealand the Ministry of Health (MoH, 2013), together with the health and social support sector, produced the National Framework for Dementia Care. It recognised that dementia care needs to be improved nationwide in a way that maximises the independence and wellbeing of the person living with dementia and their family members. The framework aims to improve the information available, dispel the myths about dementia and ensure that the health professionals, people living with dementia and their families are adequately educated about the realities of dementia. The educational factors within the framework (MoH, 2013) identify educational and training opportunities which should: • Be based on best practice. • Focus on the meaning of a people-centred and people-directed approach (MoH, 2012). • Include input from people with dementia and their families. • Include experiential learning. • Address different learning styles and abilities, including English as a second language. • Recognise the different needs of cultural diversity and cultural groups and finds ways to address those needs. • Respond to the needs of people with co-existing conditions and/or impairments. • Be supported by the health and social support service providers. The frameworks principles promote following a person-centred approach, which stems from the MoH (2013, p.2) acknowledgment that “in the past people living with dementia have been treated with only a medical model of care, which does not maximise towards a more integrated approach that includes both health and social aspects of care. Support services need to take into account the spiritual, family and whanau, cultural, economic, social and occupational needs as well as the health needs of the person living with dementia to maximise the person’s independence and well-being”. Here, we can see the MoH (2013) have further identified there needs to be a shift away from the biomedical model towards a bio-psychosocial model. Understanding the biological, psychological and sociological (bio-psychosocial) perspective, recognises that all these components interact to determine the individual’s experience of the condition (Brooker, 2004).
- Understanding the biological, psychological and sociological (bio-psychosocial) perspective, recognises that all these components interact to determine the individual’s experience of living with dementia (Brooker, 2004). Kitwood (1993) acknowledged the bio-psychosocial model within his Enriched Model of dementia. Although neurological damage may be seen as the primary cause of problems, life history is identified by Kitwood (1997) as one of the key components in this bio-psychosocial model, which can have a profound effect on how the person lives with their dementia. Kitwood (1993) was key in instigating debates surrounding person-centred care approaches with people living with dementia and his influence remains central to current thinking.
- My own experience of the significance of life history work has developed during my current role working as a dementia educator for the Canterbury District Health Board (CDHB) on the South Island in New Zealand. This consists of being engaged with planning and facilitating a dementia education programme (Walking in Another’s Shoes-WIAS) for health professionals (registered nurses, nursing assistants, occupational therapists and activity therapists) who work alongside people living with dementia. Through reading and discussing case studies with other health professionals working within aged care, it became evident how knowing a persons life history can be invaluable in understanding and assisting the persons well-being.
- The pre workshop Likert rating scale was a self-assessment of knowledge, understanding and confidence in relation to LHW in dementia. The post workshop Likert rating scale reassessed these same areas, with an additional open-ended questionnaire to gauge what their main learnings from the LHW education had been; what they felt able to implement in their workplaces, and what possible improvements could be made to the education provided. The focus groups were conducted 4-6 weeks after the life history work education. There were 11 health professionals attended a focus groups, with a total of 4 separate groups being arranged. The groups lasted between 30 to 75 minutes, during which time I made written notes of the answers provided, with the sessions also audio-taped. The tapes were later transcribed, which enabled me to clarify answers and identify themes. Finally, semi-structured interviews ascertained family members’ thoughts about life history work and its impact on their relative living with dementia. The focus was on the experience of the process introducing/using life history work, not on personal details of the person living with dementia or their family.
- The initial phase was a pre and post-test Likert rating scales/questionnaire completed by the attending health professionals on the day of the LHW education. It was designed to measure the immediate impact of the education on their knowledge, understanding and confidence From the 12 health professionals who attended the LHW education 11 returned the pre and post Likert rating scales/questionnaires. All 11 health professionals who completed the pre/post Likert scale questionnaire’s showed an increase in knowledge, understanding and confidence post education.
- The LHW education enabled health professionals to reflect on their own personal life histories and understand how these life experiences shape their opinions, knowledge, feelings, bias, loves and hates. In doing this they were able to gain insight into the potential thoughts and feelings that are experienced during the gathering and use of LHW for people living with dementia and their families. With the use of LHW people living with dementia were described as displaying indicators of well-being, such as showing pleasure, affection, responding to humour and expressing themselves creatively. Equally, those health professionals and family members involved, displayed their helpfulness, affection and sensitivity to the needs of others. As noted by Loveday (2013) dementia education has to be more than simply understanding the biological impact upon the brain and body, it has to highlight the psychological and social effects, those things which make us human, with our unique life histories which help shape us into the individuals we all are.
- Phase three involved undertaking semi-structured interviews with three family members. These family members had been included in LHW, introduced to them by health professionals who had attended the LHW education. Three themes were drawn from the thematic analysis of the semi-structured interviews with family members: • Life history work is used to assist with the person’s well-being. • Life history work is used to understand what the person is communicating. • Families use life history work in a variety of ways.
- • Future LHW education can be improved by being delivered over 2-3 workshops covering a 2-3-month time period, which incorporates monthly teachings and application of LHW into the health professional’s workplaces. This will enable the participants to have the time to share their reflections and knowledge amongst their workplace peers. • Make the inclusion of LHW education a resource which is both cost effective and relevant to ARC facilities. • It would also be beneficial to evaluate the LHW education which involves other multidisciplinary groups of health professionals, such as social workers, occupational therapists and rest homes managers. Involving more disciplines and management can enable greater multidisciplinary understanding of LHW and promote its enhancement. • I foresee a programme of LHW education being delivered to individual aged care facilities. This would enable the majority of health professionals to undertake LHW education and introduce LHW as a team into their workplace, thus eliminating the issue of their not being adequate time for a single health professional to complete all the LHW. Team focused LHW education would also generate discussion and reflection based around people and situations that everyone was familiar with. • Education around LHW needs to be incorporated for family members, to assist them in understanding its importance and provide further support. As highlighted within this evaluation, such education can provide families with feelings of inclusion, being listened to and pride. This particular education could be provided by those health professionals who had undertaken the LHW education, which can then increase their own confidence to become leaders of person-centeredness within their work environments.