Professor Fran McInerney Australian Catholic University/Mercy Health, Melbourne

1. Mental Illness or Terminal Illness? Competing constructions of advanced dementia and implications for care Professor Fran McInerney Australian Catholic University/Mercy Health, Melbourne IFA 11th Global Conference on Ageing 28th May – 1st June 2012 Prague, Czech Republic

2. Co-authors • Prof Andrew Robinson • Dr Sharon Andrews • Ms Cathy Donohue • Ms Susan Leggett • Dr Chris Stirling • Assoc Prof Chris Toye • Prof Michael Ashby

3. Presentation Overview • Part of a larger mixed methods study exploring communication between formal & informal caregivers of people with dementia (PWD) resident in residential aged care facilities (RACFs) • Reports on qualitative findings with family members (interviews) and carers (focus groups) of people resident in dementia units • Project supported by an Australian Government Department of Health & Ageing Local Palliative Care Grants Program (Round 5 Dementia) Grant

4. Dementia in the Residential Aged Care Context Dementia is an issue of increasing concern in Australia & internationally Latest Australian figures identify dementia as the third leading cause of death in Australia (AIHW 2011) & the second leading cause of disability burden (Al Aust 2008) Increasingly recognized as a progressive, global, life-limiting, condition however, large gaps in understanding still evident At least 50% of PWD (moderate to advanced) are resident in RACFs (Al Aust 2008) At least 50% of the total RACF population consists of PWD – closer to 80% in high care & 100% in dementia units (DUs) (AIHW 2010)

5. Dementia as a Terminal Condition In later stages, PWD commonly experience: Eating & drinking problems; Dysphagia; Weight loss; Infections; Reduced mobility; & Dyspnoea All of which contribute to mortality Prognosis from diagnosis to death has been estimated at 4.5 years (Larson et al 2004), while for those in the most advanced stage (eg those resident in DUs), the survival time has been estimated at 6 - 24 months (Mitchell et al 2009)

6. Dementia as a Terminal Condition • Under-recognition of dementia as a terminal illness has been argued to contribute to: • Inadequate pain/symptom management; • Overuse of treatments such as enteral feeding; • Aggressive antibiotic therapy; • Invasive & futile diagnostic tests; & • Inappropriate hospitalizations at the end of life • ...all contributing to extended suffering of the PWD...

7. Study-participant design (family) • Purposive sample [n=14] out of a possible 60 family member volunteered to be interviewed • Participants’ loved ones had been resident in a DU at one of four RACFs in metropolitan Melbourne (2) & Hobart (2) for between 12 and 36 months • Participants comprised a range of relationships to the PWD - spouses, siblings, & offspring • Each participated in one audio-taped, semi-structured interview of approx one hour’s duration

8. Study-participant design (staff) • Focus groups [n~40 in 8 groups of b/w 2- & 9- members] • Care staff (nurses and personal carers) primarily currently working in the DU at one of four RACFs in metropolitan Melbourne (2) & Hobart (2) • Audio-taped, mixed and workforce-specific focus group of approx one hour’s duration

9. Method – interview/focus group areas • Interviews/focus groups canvassed a range of areas, including: • Participants’ understandings of dementia; • How they acquired such understandings; • Participants’ understandings of PWDs’ care; • Participants’ understandings of palliative care; & • Participants’ thoughts on the relationship between dementia & palliative care • This presentation focuses on findings from the first question discussed ...

10. What is Dementia? Mindy-body split? • Family members repeatedly constructed dementia as a quasi-mental condition: • ...with mum it is more of a mental thing ... because physically she seems fine but it is just her behaviour and that sort of thing [FDU2] • It’s not as though he’s a sick person ... It’s the mind involved, it’s coming from the mind [FDU14] • Just a confused mind ... That is in the mind but the body to me is [sic] two different things. You can have dementia but you can still walk and you can still do things [FDU5] • Like one ...[other resident with dementia] ... she walks around, she’s got no problems, her mind’s gone but physically she’s fine [FDU10] • Body and health is reasonable, it’s the mind that’s haywire ... [FDU11]

11. Staff had a similar focus… • Because it’s there [points at head] – because dementia is mental, it’s something not physical [EN FG5] • Just confusion. Some people are very nice, some people are very nasty… [PCA FG5] • Somebody who’s not capable of making maybe everyday decisions. They can’t dress themselves or they can’t remember where they are or what to do even, if something’s put in front of them, what to do with it… [RN FG8] • …behaviour...Behaviour is a key thing…But also comes aggression a lot of the time with the dementia because we’re under routine, and things have to be done and they don’t want it done, and then that triggers. So a lot of aggression comes out as well… [PCA FG2]

12. Fair enough? The lived experience… I: I wondered if you could tell me what you understand dementia to be? R: In her case it was really a little bit, almost schizophrenic ... she started thinking people had been in the house and had walked through the house, and she would go out at night, and we were away overseas at the time, and she would go out at night thinking there had been an accident and she had to find people. I: Right, so she had what we might call delusions? R: Yeah. I: She thought things were happening that weren’t? R: Yeah and she would go out at night ... [DU13]

13. Staff constructing dementia through an aberrant behavioural lens • …you don’t know what [sort of] dementia that person has and you go in there you think ‘oh he has the same dementia as the other person, the person that was always quiet, always like that’… And then you into the room and he goes off, you might not know what's going to happen [PCA FG4] • ... it’s come to the stage where she’s, basically, assaulted three people now and it’s not just going up and slapping. So he’s [GP] had to look at it now, he has to do something. But I feel that could have been dealt with 12 months ago with something... [EN FG1]

14. Into the DU: intimations of madness, not mortality… • ... when they put him [Dad] into that area [DU] she [Mum] was very upset initially because of all the people wandering around, and you go to visit dad and all these people just sort of; it’s just like something out of, for us, One Flew Over the Cuckoo’s Nest, that’s how I felt as well ... it’s just the foreign, the mental illness thing, the dementia and Alzheimer’s ... [DU12] • ... obviously I wouldn’t like it [the DU] either if you had these creatures, quite mindless watching ... I mean none of us would like it ... [DU13]

15. The Stigma of the Madhouse… R1: See I hate it being called the dementia unit because it’s… R2 …I agree with that, I agree with that. R1: It’s the behaviour unit, it’s…It’s the wandering unit. I: Yes? R1:I only call it the dementia unit here [with staff], but I call it St X [outside of staff space] R2: Yes, that’s exactly right. Yes, it’s either the wandering unit or the blue door, or something… [PCAs/Lifestyle FG3]

16. PWD: Mentally ill, physically well? • The persistent split articulated between physical & mental health, or 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] • 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]

17. 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 deadfrom that [PCA FG7]

18. Implications of findings… • Dementia was dominantly constructed as a mental illness and not a terminal condition by PWDs’ family members & formal carers • Terminal symptoms are frequently under-recognized (eg pain) or aggressively treated (eg hospital transfers) in PWD • Families are frequently called upon in the RAC sector to make decisions about care planning and medical treatment for PWD that they are arguably not equipped for

19. Implications • Seeing dementia through a mental illness frame may serve to obscure the condition’s terminal nature & contribute to a lack of appropriate care for PWD approaching the end of their lives • Greater efforts to enhance families’ and formal carers’ understandings of the more global nature & likely course of dementia are indicated to assist in the mindful provision of care (especially palliative care)

20. Thankyou