Ensuring the physical and social environments meet the needs of people with dementia who are nearing the end of life

Transcription

1 Ensuring the physical and social environments meet the needs of people with dementia who are nearing the end of life Dr Fiona Kelly

2 In this presentation, I will Discuss dementia friendly design. Describe how this applies (or not) to people with dementia nearing the end of life. Identify some of the challenges of caring for people with dementia nearing the end of life. Discuss how a selfhood approach can support good end of life care. Prompt lots of discussion! 2

3 Marshall (1998) dementia design principles Compensate for disability Maximise independence Enhance self-esteem and confidence Demonstrate care for staff Be orientating and understandable Reinforce personal identity Welcome relatives and the local community Allow for stimuli. 3

4 Be safe and secure Be small Fleming et al. (2003) dementia design principles Be simple and provide good visual access Reduce unwanted stimulation Highlight helpful stimuli Provide for planned wandering (sic) Be familiar Provide a variety of spaces with opportunities for both privacy and community Provide links to the community Be domestic and homelike. 4

5 Shifting focus of design Design for practitioners Design to keep people safe planned walking, secure units Design for surveillance open plan, central nurses station Design to suit people with dementia Maximise skills allow meaningful activities Retain independence and compensate for disability understandable furniture and fittings Emphasis on outdoor environments and bringing the outdoors in Design to enable living well in people s communities People with dementia nearing the end of life? 5

6 Gap in current design principles Focus on independence and abilities might not accurately reflect all needs and wishes; this might particularly be the case for people with dementia approaching the end of their lives. Informed by practice experience and literature. 6

7 Research questions* What is the evidence base for designing for people with dementia who are nearing the end of their lives? What are the needs and wishes (in terms of the design of care settings) of 1) people with dementia who are nearing the end of their lives, 2) family members of people with dementia who are nearing the end of their lives and 3) practitioners caring for people with dementia who are nearing the end of their lives? What (if anything) needs to be changed in existing design principles to meet all their needs? * Research team: Professor Richard Fleming, Dr Fiona Kelly, Dr Gillian Stillfried 7

8 Methods A review of relevant literature. 3 focus groups to explore key informants views on what elements of the design of the physical environment would support good practice and a good death. 11-item list of desirable design features to support the care of people with dementia nearing the end of life; derived from focus group findings. A 2-stage survey of 21 academic and practice experts from Australia and the UK (architects, designers, dementia and palliative care professionals) to agree and amend existing design principles. 8

9 This presentation will describe focus group findings and agreed principles Three focus groups were carried out in three cities along the East coast of Australia. Focus groups comprised recently bereaved family carers of people with dementia (11), people with dementia (2) and practitioners caring for people with dementia nearing or at the end of their lives (5). 9

10 Analysis Voice files transcribed verbatim. Thematic analysis based on topic guide from focus groups and to explore for emerging themes. Initial coding by FK, reviewed by RF for rigour and accuracy. 10

11 Key findings: comfort through engagement. Participants illustrated how aspects of the environment can facilitate the provision of comfort to the person through appropriate engagement with senses, spiritual engagement or through social engagement with significant others. Something I did with my dad is he used to get up and wander every night and purely by accident one night the cat got stuck in his room and he actually didn't get up that morning, and when I went into his room the cat was curled up in bed with him. And so from then on for the last two years, every night, I put the cat in bed with him, and he actually died at home with the cat around him. (FG2F6) 11

12 Key findings: calm environment Participants want the environment to facilitate varying degrees of stimulation depending on need, ability or wishes, and it should be conflict-free. I think the calm and peaceful environment is for me, walking into an environment where there's lots of noise and other surroundings going on seems to affect my coping skills and how I would interact. And I feel that certainly that will stay until the end, the quiet peaceful, serene surroundings seems to be the most important thing, it does impact greatly I feel. (FG2Fd9) 12

13 Key findings: feeling at home/familiar Participants want the environment to be familiar and homely, with the person s own possessions and whatever is familiar to them. So I brought in some of her paintings and photographs, everything that's all around the wall, TV. And outside she's got a door that opens out into a little porch which has a table on it and two chairs, and she can look straight out into the car park and see me coming in. So it is a really wonderful facility. (FG2M3) Because the last thing I want to happen to me is to be moved. I want to feel at home. (FG2Fd1) 13

14 Key findings: privacy and dignity Participants want to see privacy and dignity maintained; this becomes more important with increasing cognitive impairment. Family carers want a quiet space to retreat to. X (other participant with dementia) and I were talking about this, that even in the final stages when we can no longer communicate. But there's still going to be a unique human being with needs like all of you...and we would want an ensuite, we would want to feel private, not wheeled along the corridor to go to the public toilet. (FG2Fd1) Is it possible to have a small space, a private space for carers that Many a time I have to go and stand in the back corridors between two houses to cry sometimes because I'm so upset, because I can't do it where (husband) is. And here I am standing out in a hallway where the laundry comes in (FG2F8) 14

15 Key findings: use of technology Participants suggested that technology can connect people with dementia to others, maintain their safety and alert practitioners of need. It must, however, be used with sensitivity to how it is understood and accepted by people with dementia. Well, when I get to that stage I would like my husband to be able to check on the webcam. (FG2Fd1) 15

16 Key findings: practitioners views Practitioners need to have an understanding of the person with dementia as someone with the potential to engage, regardless of severity of dementia. The drivers (syringe) really are a great idea The workload reduces, you re not doing PRNs every evening. (FG3F5)...keep it nice and simple, once they get to palliative with a syringe driver, they usually won t hit out, they don t kick, they don t walk, they won t bite, they don t scratch...they are so peaceful and calm and they just lie there, they re basically asleep the entire time... so it really doesn t...the environment around them doesn t matter... (FG3F1) 16

17 Key findings: institutional influences Working within institutional constraints made it difficult for practitioners to think beyond their own day to day practical concerns and beyond the labels applied to their patients. Language task-based: dementias, dementia cases. the respites, behaviours. wheelchairs, lifters You don t have the resources to... And if you could take two off to look after the one that was dying... (FG3F2) 17

18 Consensus process to agree final design principles The environment should: Support the continued use of the senses Provide access to the outdoors/natural environment Provide access to nature indoors (e.g. plants, natural light, fresh air) Provide opportunities for engagement with spiritual aspects of life Provide opportunities for social engagement Promote of a sense of familiarity and homeliness Provide opportunities to be with family Promote calmness and privacy and foster dignity Support safety and security Support staff, residents and visitors to find their way around Enable visual monitoring by staff via human contact Reduce physical stress (e.g. provision of appropriate beds/mattresses) Facilitate nursing care 18

19 End of life design principles Engagement Sensory Spiritual Social Nature Calmness Familiar Homely Care Dignity Privacy Reduced physical stress Safety and security 19

20 Challenges of caring for people with dementia nearing the end of life Difficulty with prognostication Ethics: decision-making (ANH) Identifying pain and distress Communication Cognitive capacity: knowing needs and wishes 20

21 Challenges to achieving excellent dementia care 1. Lack of knowledge and awareness of dementia 2. Organisational factors Institutional abuse. Safety versus risk. 3. Philosophical factors Descartes. Other, differentness. 4. Practice factors Difficult nature of aspects of the work Medicalisation of dementia inevitable decline, no cure. 21

22 Institutional abuse Poor staff/patient ratio Excessive, unquestioned use of restraint Large, unhomely wards with poor lighting Poor catering, little choice Meals to suit needs of institution Lack of mental stimulation Lack of privacy Generalised care Inadequate staff training Poor workplace morale (Bennett et al., 1997) 22

23 Reflective care Innovative practices to support excellent end of life care. 1 Coma work 23

24 Innovative practices to support excellent end of life care. 2 Flexible thinking Creativity 24

25 Importance of recognising selfhood 25

26 Enduring selfhood (Sabat, 2001) Self 1: I, me, myself, mine or ours. Self 2: One s physical, mental or emotional characteristics and attributes, and also one s beliefs and desires about them. Self 3: The publicly presented aspect of ourselves; the roles we take on and the appropriateness with which we behave in social situations. 26

27 Consequences of assuming loss of selfhood Vegetable An empty shell No longer the person he/she was Social death (Sweeting and Gilhooly, 1997) Family should be allowed mourn the person before he/she dies (Davis, 2004) Assuming a loss of selfhood with advanced dementia implies that there is no affront to human dignity in treating those who are cognitively impaired as though they are unable to experience humiliation. (Kontos and Naglie, 2007: 551). 27

28 Difficulty with a person-centred approach Focus on seeing the individual with unique needs, wishes, likes, dislikes, biographies.. One personal plan stated: Likes cats. Likes milk. This was the only personal information in the plan to help care staff plan this person s care. (CC/MWC, 2009:29) What if I am a new or agency carer and do not know anything about the person, or very little? 28

29 Alternative approach empathically reflect on commonalities of selfhood (Kelly, 2014) Empathy in care work requires being sensitive to patients sense of vulnerability (Vanlaere et al., 2010). Core me (Self 1) Fear (Self 1) Corporeality (Self 2) Characteristics (Self 2) Abilities (Self 2) Loneliness (Self 3) Relationships and roles (Self 3) 29

30 Physical and social environments to support excellent care of people with dementia nearing the end of life Engagem ent Sensory Spiritual Social Nature Calmness Familiar Homely Care Dignity Privacy Reduced physical stress Safety and security 30

31 References Bennett, G., Kingston, P. and Penhale, P. (1997) The Dimensions of Elder Abuse: Perspectives for Practitioners, London, Macmillan Press. Care Quality Commission (2013)The state of health care and adult social care in England in 2012/13 Davis, D. (2004) Dementia: sociological and philosophical constructions, Social Science & Medicine, 58: Fleming, R., Forbes, I., Bennett, K. (2003) Adapting the ward for people with dementia. Sydney: NSW Department of Health Kelly, F. (2014) Bodywork in dementia care: recognising the commonalities of selfhood to facilitate respectful care in institutional settings, Ageing and Society, 34(6): Kontos, P. and Naglie, G. (2007) Bridging theory and practice: imagination, the body, and person-centred dementia. Dementia, 6(4): Marshall, M. (1988) Therapeutic buildings for people with dementia. in Judd, S., Marshall, M., and Phippen, P. (eds.) Design for Dementia. London: Hawker Publications. p Sabat, S. (2001) The Experience of Alzheimer s Disease: Life Through a Tangled Veil. Blackwell Publishers, Oxford Sweeting, H. and Gilhooly, M. (1997) Dementia and the phenomenon of social death, Sociology of Health & Illness, 19(1): Vanlaere, L., Coucke, T. and Gastmans, C. (2010) Experiental learning of empathy in a care-ethics lab. Nursing Ethics, 17, 3,

32 Any questions? Thank you for listening. Slides 25 and 26: Photographs by Tony Marsh Tony Marsh Photography

33 Acknowledgements Many thanks to everyone who took part in the focus groups, to those who helped organise them and provided refreshments. This project has been funded by the Dementia Collaborative Research Centre, UNSW, Sydney, Australia. 33

34 Thank you for listening Dr Fiona Kelly, Bournemouth University Professor Richard Fleming, University of Wollongong Dr Gillian Stillfried, University of Wollongong 34