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 dead from 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