Fran McInerney Prof Aged Care, Australian Catholic University/Mercy Health March 16 th 2012

1. Health Decision Dilemmas: Rights, Responsibilities and Risk Forum :What do we know from sector experience? Fran McInerneyProf Aged Care, Australian Catholic University/Mercy Health March 16th2012

2. Acknowledgements • Funded through DoHA Local Palliative Care Grants Program (Round 5 Dementia) • Partner organizations • Wicking Dementia Research & Education Centre (Tas) • Catholic Homes • Royal Freemason’s • Southern Cross Homes (Tas) • One Care (Tas) • Curtin University

3. Problems Identified in Literature • Lack of awareness of dementia’s terminal natureamong care staff and family members • Poor communication between RAC staff and familymembers about dementia’s likely trajectory • Burdensome and futile treatment experienced by those with advanced dementia approaching the endof life • Lack of understanding of the possibilities offered bya palliative approach in dementia care

4. Project Objectives • Develop an integrated dementia-palliative care resource nurse (DPRN) role in each RACF • Enhance the capacity of the RAC workforce to develop evidence-based palliative care practice in dementia • Develop and trial a discussion tool and supporting strategies to enable open staff-family caregiver dialogue about the dementia trajectory, and issues of deterioration, mortality and palliative care • Enhance end of life care and advance care planning options available to family caregivers

5. Research Sites • Four RACFs – two in Melbourne; two in Hobart • Staff cohort approx 320: 52 RN; 50 EN; 221 PCA/lifestyle • Resident cohort = 257 overall with dementia • DU residents = 77

6. What we did – study design • Select/train a dementia/palliative resource nurse in each facility • Gather baseline data – quantitative • Surveys (83% of staff; 49% of families of people with dementia) • Knowledge of dementia; knowledge of palliative approach; staff confidence; family satisfaction • Baseline data – qualitativeInterviews with DoNs/DPRNs x 9 • Knowledge of dementia and palliative care • Organizational capacity Staff focus groups x 8 • Knowledge/attitudes to dementia/palliation Family interviews x 14 • Knowledge/attitudes to dementia/palliation

7. Results – Knowledge of dementia - staff • Key knowledge deficits identified, principally that dementia is a terminal condition – 52% correct at baseline • Similar difficulties shown in understanding of later life symptoms of dementia, eg swallowing, mobility, and increased infection rates – reflecting emphasis of education

8. Results – Knowledge of dementia - Family • Only 38% identified dementia as a terminal condition at pre-test • Similar deficits seen in relation to multiple other areas related to the dementia trajectory • However, while on average family member’s knowledge was poorer, some family had an equal to or better knowledge than nursing and care staff • Qualitative data reinforced this, with family seeing dementia as not a terminal condition • These findings highlight the importance of determining family understanding of the condition

9. Results – family knowledge of dementia • The persistent the failure to recognize that dementia has global effects on the brain & therefore the body, left the issue of dying from dementia in a confused, peripheral basket for most relatives: • I don’t think there’s anything else wrong with mum. She’s never been a sickly person. It’s just the way this dementia has hit her ... we think when we go and visit her I think, she’s going to live for years ... Because her body’s not worn out ... She’s still got her own teeth ...[DU1] • In my mind it’s [death is] going to be an infection, it’s going to be pneumonia because physically, I mean as far as we know, there’s nothing else that’s wrong with her. She has not had heart problems, she’s had the gallstones, so you know ... [DU7]

10. I just was curious how, if it’s a mental condition, like ... what happens in the body that makes you actually die from it [dementia]? [DU3] • It’s not as though he’s a sick person, it’s just the head ... He doesn’t have any other problems, like medical problems ... [DU14] • I had friends that their parents had cancer or whatever, but not dementia. And like I said, people would say to me, ‘gosh your mum looks fantastic’. And that’s what I mean, it’s about a disease that they look in the beginning, they look good... [DU6]

11. Staff also struggled with dementia as a terminal condition • Well, they might have heart problems, something else. We’ve never actually had somebody that’s [died of dementia]… • …How can you say someone’s died because of dementia…? What would be the cause? [PCAs FG2] • A lot of the ones that we look after with dementia, they’ve got other underlying problems as well … I reckon they seem to last longer when they’ve got the dementia, because they’ve forgotten everything else that’s wrong with them and then it might seem like just ‘wham bam’ it just happens. So I would say you die of something else, with dementia [EN FG4] • I never see dementia, dying of the dementia. I never see that they’re dead from that [PCA FG7]

12. What we did - interventions • Presence of DPRNs – knowledge sharing, practice change • working with action groups • awareness raising posters and memos about dementia, palliative approach and talking with staff/family members around facilities • Staff education focusing on key deficits identified in the baseline data – • 3 sessions: Dementia as a terminal illness; Dementia and palliation; Family support and communication, with case study • Discussion tool for staff to guide staff/family communication about the person with dementia • Talking about dementia and dying: A discussion tool for residential aged care facility staff • Family education offered • 1 x 2-hour session per facility with Dr Jane Tolman: stages of dementia, when and what care needed, Q & A • The “Green” book, Prof Esther Chang’s Dementia: Information for carers, families and friends of people with severe and end stage dementia • Trial of discussion tool –used by DPRNs to guide meetings with family members and talk about dementia, the illness trajectory and care planning

14. Talking About DEMENTIA and Dying A Discussion Tool for Residential Aged Care Facility Staff

17. Engagement in Interventions • 14 education sessions offered to staff at the 4 facilities • 140 attended (43% of all staff) • 4 education sessions offered to family members • 99 family members attended • Discussion tool-guided meetings • 9 completed

18. Final (Post) Data Collection • Resurveyed staff and family members using the same suite of quantitative tools • 176 of the baseline 223 staff (78.9%) completed both pre and post surveys • 50 of the baseline 127 family members (39.3%) completed both pre and post surveys • Re-interviewed the DPRNs • Discussion tool trial diaries from staff members, and interviews with family members

19. Results – understanding dementia as a terminal condition • Staff knowledge of dementia as a life-limiting condition showed a 42% increase, from to 52% to 74% of respondents correct post-education • Similar improvements shown in understanding of later life symptoms of dementia, eg swallowing, mobility, and increased infection rates – reflecting emphasis of education • Only 38% of family identified dementia as a terminal condition at pre-test – this increased by 64% to 59% correct at post-test; similar improvements seen in acute confusion; reduced mobility; and swallowing difficulties

20. Results – Discussion tool trial • Family responses were universally positive • Well it was the first time that I had actually had a discussion about [my aunt] in two and a half years [FC1] • [The DPRN] is very on the ball, she’s got a very good grip, so I don’t think the GP would have helped...And in fact I think if a doctor had been there it might have detracted from that [conversation], just because doctors can often tend to think that they’re [smiles and shrugs]... [FC3] • I would certainly think...just a chat about [relative] on a one to one basis would be a good thing. Particularly as the dementia progresses and things change, either in her behaviour or in her health. Certainly I would welcome that [FC4]

21. Results – opportunities to plan care • ...we did talk about palliative care and I said, ‘yes [care for him] here. There’s no need to go to the [hospital] [FC7] • ...you’re not sure what other people think so you’re not sure how clearly to put it so I was probably a bit vague there and I maybe hadn’t refined the thought... in fact I think that was what was good about the... things that the DPRN was saying. I felt quite relaxed about saying ‘no, no I’m actually not concerned about keeping him alive...I’m concerned about his comfort and while he’s alive he’s painless [sic] and his comfort, that’s it basically [FC5]

22. Results – families being heard through dialogue • I walked out of there [dialogue] and I was elated and I went and saw [mother-in-law] before I left [FC10] • I’d rather be at the coalface than down the back asking ‘what’s going on?’ My word [FC11] • ...the dialogue has made me feel calmer in the sense that I don’t fee great uncertainty, the uncertainty of ‘I wonder if this will turn around or I hope that this might happen’. All those things that cause you to be emotionally unsettled are not happening any more... [FC5] • ...it struck me that [the dialogue] should be just a standard issue for all facilities to have this discussion regularly, and it surprises me in a way that it has to go through a researcher like you to suggest that this is what happens [FC9]

23. Recommendations – Local • That information via education/conversation/ distribution of information booklet (Chang et al) be made available to family members of those with dementia on admission • That families of PWD be followed up around their needs post education • That family meetings address issues around dementia for affected individuals as a matter of course – facilitated by discussion tool • That family meetings for those with advanced dementia be considered to be conducted at a greater than yearly interval • That families be assisted to engage in care planning

24. Recommendations – Local (cont’) • That champions in dementia care be encouraged, but also carefully selected and supported to aid in sustainability • That more junior care staff be assisted to identify cues and participate more meaningfully with families in conversations around dementia care needs • That staff education in dementia palliation be continued to account for workforce attrition and forgetting over time • That case reviews of PWD transferred to hospital be undertaken to assess efficacy of decision

25. Recommendations – Broad • Establish on-going knowledge translation partnerships between aged care providers and education/research agencies • Provide RACF staff with ongoing access to education around dementia-palliative care • DoHA-funded roll out of a nationally consistent evidence-based dementia-palliative care education model for family carers • DoHA-funded ‘clearinghouse’ for evidence-based dementia-palliation resources to assist the above two recommendations • Strategies to address communication between RAC staff and family members around dementia decision making be developed

26. QUESTIONS? • COMMENTS • THANKS 