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

Co-authors

Prof Andrew Robinson

Dr Sharon Andrews

Ms Cathy Donohue

Ms Susan Leggett

Dr Chris Stirling

Assoc Prof Chris Toye

Prof Michael Ashby

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

• 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)

Dementia in the Residential Aged Care Context

• 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)

Dementia as a Terminal Condition

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...

• 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

Study-participant design (family)

• 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

Study-participant design (staff)

• 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 ...

Method – interview/focus group areas

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]

What is Dementia? Mindy-body split?

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]

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]

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]

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]

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]

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]

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]

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

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)

Thankyou