1. LISTENING TO THE
PERSON LIVING ALONE
WITH DEMENTIA
UNIVERSITY OF TASMANIA
Corinna Dwan
PhD Candidate
May 2012
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2. Overview
• Research Study
• Narrowing Environment
• Maintaining Environment
• External Environment
• Conclusion
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3. Research Aim
Exploration of the underlying causal
mechanisms and the interplay of factors
which attribute to a loss of agency in a
person living alone with dementia
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4. Why is Agency important?
• Definition:
“Human agency is the capacity of an
individual to act independently and to
exercise choice.” (Kontos et al 2010)
• Bandura (2001) states that:
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“the capacity to exercise control over the
nature of one’s life is the essence of
humaness”.
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5. Why is Agency important?
• Dementia causes impairment of brain
functions, including language, memory,
perception, personality and cognitive skills
(Australian Institute of Health & Welfare
2007).
• Dementia diminishes the capacity of an
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individual to act and over time, results in a
complete loss of agency.
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6. Why is Agency important?
• Involving and supporting a person with
dementia in their own decisions increases
their feelings of autonomy, identity, and
quality of life. (Church et al. 2002; Whitlatch &
Menne 2009).
• Few studies have been conducted on the
perspectives of people living alone, although
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one-third of persons with dementia live alone
in the community. (Ebly, Hogan & Rockwood
1999; Edwards & Morris 2007; Webber, Fox &
Burnette 1994)
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7. Research Methodology
Critical Realist theoretical framework
• Focuses on the relationship between social
structures and human agency (Angus et al
2006)
• Social structures are the conditions or
contexts of a person’s life which provide
resources that may enable or constrain an
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individual to act (Angus 2006, Wand 2009)
• Semi-structured interviews were conducted
with nine individuals (4 females and 5 males,
ages 48 – 86)
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8. Narrowing of Environment
• Almost all participants interviewed realised
and experienced a loss of agency.
• This loss in agency resulted in a contraction
of their social environment. Some of the
factors impacted by their diminished capacity
which contributed to their narrowing
environment included:
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– Driving
– Employment
– Leaving home
– Legal responsibilities
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9. Driving
Michael: “I have no car, so I can’t do all the
things I like to do because I don’t
have a car.”
Mary: “I couldn’t drive the car. The most
frustrating thing was not to be able to
get out and get in the car, and go
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down the shop, and get a loaf of
bread and a pint of milk, or whatever
might be, and it’s frustrating. I
couldn’t go and see anyone.”
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10. Employment
Jane: “There’s no way I could function
anymore. And I knew that. I knew that
that was part, that was very
distressing as well because I knew that
I had to give up work so I kept
stretching it along and I thought I can’t
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do this anymore.”
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11. Leaving home
Paul: “I’m scared to walk off down the
road and then I worry about
getting back because I tend to go
too far and find I couldn’t get
back.”
Adam: “I don’t go out.”
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Interviewer: “Is there a reason why you don’t
go out?”
Adam: “Because when I leave Moore
Street I am lost. And I’m scared.”
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12. Legal responsibilities
• Managing paperwork posed a real difficulty
and it tended to be found in large piles.
Mary: “I’ve got to get out of this muddle. You
know I can’t get that table cleared. I
keep trying, and it’s been a misery
really.”
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Ann: “There’s a lot of things I would like to
tidy up. But the things that aren’t tidy
need a healthy brain to fix them.”
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13. Maintaining Environment
• Although participants were losing agency
they were striving to find ways to retain it.
Maintaining their current environment,
particularly their home, emerged as a
significant factor in retaining control as;
– Owning their home enabled them to stay there
– One can do as one pleases
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– A familiar environment assists in coping with
their memory loss
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14. Owning their own home
When asked what do you think of your current
living situation or life as a whole?
Jane: “I like where I live. This is my house.
My unit. So no one’s going to kick me
out.”
Ann: “I would say for one thing I’m lucky
I’m in my home, nobody can force me
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out of it. I can’t consent to being
shoved into a something or other. And
I won’t consent to it.”
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15. Doing as one pleases
When asked would they ever think of living in a
community residence?
Mary: “ I mean why would I want anything
else. I mean I can still have friends and
you can still have company, but I can
listen to whatever music I like to listen
to.”
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16. Familiar Environment
Mary: “ And I can’t just give it up, and the
thought of packing it up, I can’t find
anything now. I mean what would I
do? It would be a nightmare. Absolute
nightmare, and I can’t do it.”
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17. Maintaining Environment
• “The core features of agency enable people
to play a part in their self-development,
adaptation and self-renewal with changing
times.” (Bandura 2001)
• Some participants have taken steps within
their own homes to minimise risk to
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themselves thus enabling them to remain
living independently.
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18. Maintaining Environment
Ann: “And of course I went to walk down
the back steps the other day for
something, not even thinking, and I
got to the second step and I thought
oh shit I’m not allowed to go down
the back steps. I quietly turned
around, came back and around the
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driveway.”
Jane: “I put everything in the oven basically
rather than on the top of the stove.”
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19. Maintaining Environment
• Two participants use a third party to monitor
their ability to perform and manage specific
tasks.
Jane: “I keep an eye on things to make sure
everything’s alright, and I get other
people to check. You know make sure
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I’m doing the right thing, that sort of
thing.”
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20. Maintaining Environment
• There was an acceptance that they will have
to enter residential care in the future. But as
long as the participants were capable of
managing at home they wanted to remain
there.
Sally: “I’m quite capable of doing things for
myself. I’m not going to go into a
nursing home unless I really have to.”
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Ann: “If I am that bad that there is no
alternative, I will face that when it
comes. If I have to go, then, I’ll have to
go.”
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21. Maintaining Environment
• But there was a fear that others in positions
of power will judge these individuals based
on their mistakes.
Ann: “But is that any reason to put me into
a home or something? I don’t think
so. I think that any mistakes I make, I
usually find out before anyone else,
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and apologise. I don’t know how
elderly people go, or how they’re
treated, but sometimes I think it’s
very unfair.”
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22. External Environment
• The external environment, particularly family
members and/or friends, were found to play
an important role in the enabling or disabling
of a participant’s agency.
• The disabling mechanism often resulted from
disagreements on the level of agency
between both parties. The consequences of
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such resulted in others;
– Speaking on their behalf
– Excluding them from decisions around their own
life
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23. Speaking on their behalf
• Mary and Betty were friends for 38 years.
Mary: “ It’s a bit spoilt with that little blue that we had,
but she [Betty] was sort of taking over, and
people come in like Polly [the advocate] and
different ones, and she was doing all the
answering. It left me – I wasn’t part of it you
know. And in the end I hit the roof. So did she.”
Mary: “It got too much with everybody talking as if I
was a nincompoop. Perhaps I was but they didn’t
have to let me know.”
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Interviewer: “And do you feel more in control of your life
now?”
Mary: “Yes. Because I’m not being dominated over. And
I was treated as if I was an idiot.”
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24. Excluding them
Sally’s was completely removed from the decision-
making process by her partners children.
Sally: “he couldn’t live here no more because he
wasn’t capable, and they said I wasn’t
capable of looking after him because I was
too frail.”
Interviewer: “And how did you feel about that? Did
you agree with their decision?”
Sally: “You can’t do anything else but agree. No
you can’t do nothing. You’ve got to go
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along with it.”
Interviewer: “Why did you feel you had to go along
with it?”
Sally: “I didn’t feel very happy about it, but
what’s the point? You can’t do nothing.”
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25. External Environment
• This disabling mechanism created tensions
between parties and invoked feelings and
behaviours such as;
– Feeling they cannot say anything as they will be
dependent on the family in the future or will not
be listened to.
– Family member tends to take over and both are
very different in personality. He would prefer
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not to live like this.
– Fear of exclusion and misrepresented thus
resulting in confrontational behaviour.
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26. Cannot say anything
Interviewer: “How does it make you feel when they
start suggesting things, or making decisions?”
Jane: “Pissed off?”
Interviewer: “Do you tell them?”
Jane: “No I don’t because I respect the fact they are
looking out for me. But yeah perhaps I need
to start telling them sometimes.”
Interviewer: “How do you deal with that feeling?”
Jane: “I get a bit upset about it, but I try not – well I
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don’t do that in front of the kids. I try not to.
And I know they’re not kids anymore, but you
know that’s … I mean I guess in a way you
know I’m going to be quite dependent upon
them you know, so I’ve got to…” 26

27. Taking over
Michael: “He will take over and say what I
should say, So he’s sort of - but he does try,
he look after for me.”
Michael: “He would look after, but I don’t
want to live like this.”
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28. Fear of Exclusion
Paul: “People say you can’t go to New
Zealand in your condition and I say why
the hell can’t I? They won’t let you go.
Who’s they? And that’s a lot of hooey. I
can’t be stopped doing anything I want
to do.”
Paul: “I worry about sort of you always
turning up here, or girls saying ‘But you
can’t do that’. And I say who the hell
says I can’t do that.”
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Interviewer: “So that’s a real worry?”
Paul: “But then they have no conception
about what my life has been like.”
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29. External Environment
• Family members, under the correct
circumstances, were also found to be an
enabling mechanism of human agency by
acting as proxy agents.
• Individuals who do not have the capacity to
make all their own decisions may seek their
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well-being, security and valued outcomes
through the use of proxy agents. They get
others to act on their behalf to secure the
outcomes they want (Bandura 2001). 29

30. External Environment
• Individuals were happy to appoint proxy
agents in certain situations/decisions. The
circumstances which facilitated this were:
– Responsibilities which were very stressful
– Having individuals they could trust in and could
reply upon
– Being able to chose the situations where they
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require involvement of another
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31. External Environment
Jane: “I haven’t got all the control anymore. In a
way that’s a relief because I don’t have to worry
about it, or think about it really, you know.”
Peter: “I rely on my son certainly more than I use
to but he doesn’t sort of press himself on me and
I can go to him and he’s been terrific.”
Ann: I’ve got no worries. I mean, whatever is
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happening I get the bill and pay it because I have
got that trust in Jack, to know that person that did
it is a reliable person and that Jack’s sort of given
his okay to anything to be done.”
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32. Conclusion
• People living alone with dementia are losing
agency and the struggle to maintain it often
creates tensions between family members
and/or service providers.
• The importance of agency to these individuals
with dementia needs to be considered by those
involved in their care.
• Ways to promote the involvement of these
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individuals in decisions regarding their own
lives should be sought.
• Involving people in decisions about their own
life improves the quality of life of these
individuals. 32

33. Conclusion
• Unless people believe they have agency they
have little incentive to act or to persevere in
the face of difficulties. (Bandura 2001)
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34. Acknowledgements
• Dr. Christine Stirling
• Dr. Emily Hansen
• Advocacy Tasmania Inc.
• School of Nursing & Midwifery & the
Wicking Dementia Research & Education
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Centre
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35. References
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realism as a new foundation for inquiry', Oncology Nursing Forum, vol. 33, no. 4, pp. 62-70.
• Australian Institute of Health & Welfare 2007, Dementia in Australia. National data analysis and development,
Australian Institute of Health & Welfare, Canberra.
• Bandura, A, 2001, ‘Social cognitive theory. An agentic perspective’, Annual Review of Psychology, vol. 52 pp 1-26.
• Church, J, Saunders, D, Wanke, M, Pong, R, Spooner, C & Dorgan, M 2002, 'Citizen participation in health decision-
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• Edwards, DF & Morris, JC 2007, 'Alone and confused: Community-residing older African Americans with dementia',
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• Kontos, PC, Miller, KL, Mitchell, GJ & Cott, CA 2010, 'Dementia care at the intersection of regulation and reflexivity:
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• Webber, PA, Fox, P & Burnette, D 1994, 'Living alone with Alzheimers disease - Effects on health and social service
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• Whitlatch, CJ & Menne, HL 2009, 'Don't Forget About Me! Decision Making by People with Dementia', Generations-
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