1. A comparison of methods in determining QOL in people with dementia living in Australian residential care Professor Wendy Moyle RN PhD Deputy Director Research Centre for Clinical and Community Practice Innovation

2. 2 Research Centre for Clinical and Community Practice Innovation, and Griffith Institute of Health Why Measure QOL in PWD? Historically, evaluation of dementia has focused on biomedical outcomes Influenced and constrained nursing responses to monitoring responses Concept of QOL has been neglected in this population Knowledge of QOL enhances our understanding of the needs of PWD and their value as human beings

3. 3 Research Centre for Clinical and Community Practice Innovation, and Griffith Institute of Health QOL Measurement Challenges Challenges in this population include: Impairments in memory, language and insight Therefore → Personal evaluations overlooked QOL inferred using observation and proxy measures Led to gaps in knowledge about the: -Experience of dementia, and -Perception of QOL in this population

4. 4 Research Centre for Clinical and Community Practice Innovation, and Griffith Institute of Health Why An Interest in Moral Worth? Research suggests nurses can make harsh judgements as to patients’ moral worth & that such judgement can impair care provision (Cassell 2004) Similarly there is tacit agreement that the values & beliefs of aged care staff effect the quality of care for PWD in residential aged care (RACF) (Lintern, 2001)

5. 5 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health Two Aims of the Research To provide an understanding of the quality of life (QOL) & perception of moral worth of people with dementia (PWD) living in residential aged care To inform a new model of care for nurses working with older people with dementia Moyle, Cheek, McAllister, Venturato & Oxlade (2007) Enhancing QOL and Moral Care in People with Dementia - ARC (L) grant LP0775127 Research Manager – Susan Griffiths Industry Partner RSL Care

6. 6 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health Research Design Mixed methods Rationale for use in this study Based on assumptions & knowledge generation Measurement issues of QOL in general & specifically to this population Multiple methods & perspectives adds to synergistic & complementary understanding of QOL & moral value in PWD Processes embodied valuing PWD

7. 7 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health Methods and Processes Multiple data collection methods: Surveys, Semi- structured interviews, Observation & Documentation Analysis 2 validated dementia-specific QOL tools; ADQ and Staff Experiences; Researcher developed moral value instrument; RSOC and interviews: QOL and Moral Value Multiple perspectives: PWD, family/friend, management, nursing & care staff Sites: Four QLD Aged Care Facilities

8. 8 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health Findings: Participant Characteristics Residents (n=61) 70.5% female; Mean age 86.7yrs (74-97); 75.4% low care All meet DSM-IV criteria Mean MMSE 21.03 (8-30) Family Members (n=59) 72.9% female; Mean age 60.2yrs (35-89) 77.9% daughter/son, 10.2% spouse 49.2% retired; 30.5% full-time employment; 20.4% part-time/casual 36.1% visit weekly; 21.3% visit 2-5/wk; 11.5% visit daily Staff Members (N=49) 91.8% female; Mean age 45.8yrs (19-60) 55.1% PCW; 18.3% RN/EEN/EN; 16.3% DT/AO; 10.2% Managers

9. 9 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health Findings QOL-AD (Adapted by Edelman et al, 2005) (1 Poor; 2 Fair; 3 Good; 4 Excellent) – resident, staff and family completed Resident (PWD) Mean (SD): 2.62 (0.45) -scored ↓ on “Energy” (2.16) & ↑ on “Relationships with staff” (3.26) Nurses’ Mean (SD): 2.33 (0.57) and Family Mean (SD) 2.34 (0.49) -scored significantly ↓ than resident on: “Relationships with staff”; “Friends”; Ability to care for oneself “Ability to make choices” (p < 0.001)

10. 10 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health Findings contd D-QOL (Brod et al, 1999) (1 Not at all/Never; 2 A little/Seldom; 3 Some/times; 4 Quite a bit/Often; 5 A lot/Very often) – Resident completed Five Sub-scales Mean (SD): between 3.40 – 3.75 Moderately strong positive relationship between “Overall QOL” (item 30) & “Felt hopeful” (0.494) & “Felt useful” (0.439) – p<0.01 - these feelings may be an important indicator of QOL. “Felt useful” and “Felt hopeful” were also the lowest rated items (2.67 (1.11) and 2.98 (1.22) respectively) N = 42 /61: The D-QOL proved more difficult to use with some residents in comparison with the QOL-AD

11. 11 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health Findings contd ADQ (Approaches to Dementia Q) (Lintern et al, 2000) - Staff completed (Scale: 1 – 5; Higher score = better) Recognition of Personhood rated highly by staff -Mean Personhood (SD): 4.35 (0.44) Hope rated lower -Mean Hope (SD): 3.66 (0.56)

12. 12 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health Findings contd Moral Value (Moyle et al. 2007) 9 items; 5-point scale - Family and staff completed High positive ratings on most items for staff & family Families however revealed some uncertainty on the following items: -“PWD have no insight into what makes them happy” (50.9% disagreed; 27.3% agreed) -“PWD have no meaning or purpose left in life” (72.8% disagreed, 16.3% agreed) Conversely 98 – 100% staff disagreed with the above statements

13. 13 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health Staff Experiences survey (Åstrom et al, 1991) – Staff completed

14. 14 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health Findings contd Adapted RSOC - (Zimmerman et al, 2001) Observations – 28 hrs / 5 min intervals Short dialogue – 8/15 communications brief (<6 words) and 7/15 (7 words – 2 mins) Limited evidence of ‘challenging behaviours’ – 2/21 residents exhibited dementia related behaviours (pacing/repetitive mannerisms) Most residents (12/21) had no physical contact during observation period – contact (6/9) defined as non-intimate (1-2 5 min periods) Documentation Analysis Demonstrates challenges with terminology & tensions in service provision -eg. standardised care - prescriptive activity programs

15. 15 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health Qualitative Findings Resident Interviews QOL described as being overall good but defined as -“.. good as can be expected” & “… having three meals a day and there’s a television to watch sport..” makes life good Staff frequently seen as too busy to spend quality time with resident -“They seem to have very short staff quite often and the girls really work hard” -Need staff to “ listen to me and that’s very important to me” Interviews suggest that PWD do not feel valued -“I don’t know that I am of any value” -“So much has been taken away from me, you're not doing things for yourself” Descriptions of feeling valued in the past -“ I used to do a lot of sewing and everything before which I don’t do now” [what stops you from doing sewing] “I can’t think the same as I used to think, I can’t organise things…” [would you like to continue sewing] “Yes”

16. 16 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health Qualitative Findings contd Staff Interviews Suggest staff are often task focused & therefore less individually focused -“sometimes you are so flat out, you are one staff member short and you think I have to pick up an extra shower…. you think I only have 10 minutes to get everyone ready for breakfast” Frequently focused on problem behaviours - [not supported by observations] Staff often used personal & instinctive approaches to care “…I don’t adhere to any model or any method and I just treat them like normal human beings.

17. 17 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health Qualitative Findings contd Family Interviews Indicate they are generally satisfied with the level of care -“She gets good care as far as her bedding, food & everything is there for her. If she wants to go out on day trips & that, we can’t complain” Some families would like to see more emphasis on care beyond meeting physical needs -I don’t have a problem with her care. I would like to see her do more, but that is another question….she does nothing other than sit in front of the TV and listen to it” Families see limitations to the level of care (esp. related to time constraints and compliance of care recipient) -[staff] don’t have that extra time to but they do the best they can I suppose under the situation

18. 18 Research Centre for Clinical and Community Practice Innovation, and Griffith Institute of Health Documentation Analysis Demonstrates challenges with terminology & tensions in service provision eg. standardised care prescriptive activity programs

19. 19 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health Integrated Findings (quant and qual) Confirmatory findings Interviews and Observations supports view that staff are task focused & frequently too busy to spend quality time with resident -Observations reveal positive staff interaction with residents yet little indication of interdependent relationships and non-task oriented care - “They seem to have very short staff quite often and the girls really work hard” -Need staff to “ listen to me and that’s very important to me” -“…they’re bright, it might be short [conversation] but it’s bright

20. 20 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health Integrated Findings (quant and qual) Conflicting findings Surveys and interviews suggest a strong focus on valuing the individual, their history & a recognition of personhood -yet interviews & observations reveal care that is more tailored to the needs of the facility than the individual. Organisational documentation reveals a strong emphasis on the value of the individual -yet some resident interviews reveal a sense of being undervalued, although this is not directly attributed to the facility or staff

21. 21 Research Centre for Clinical and Community Practice Innovation, and Griffith Institute of Health Things that add to QOL Opportunity for activities that meet individual needs More interaction/companionship “I’m always lonely…” Enhancing hopefulness “Haven’t got much to feel hopeful about really..” Environment – one that allows connection with outside world and variety “We’re all shut in here… I love to watch the moon and sun come up and go down…”; “I need variety, a change of scenery, tired of small talk” Opportunity to feel useful “When you’re not useful you’re finished” Food Humour – takes away from mundane Importance of individual biography linking above

22. 22 Research Centre for Clinical and Community Practice Innovation (RCCCPI) & Griffith Institute of Health Conclusions Multiple methods and perspectives add strength to an understanding of the QOL and moral value of PWD Areas of convergence & non-convergence in evaluations of QOL between staff/family & the PWD help with development of a model of dementia care Strengths and limitations of each approach Limitations are reduced when mixed methods approach taken