AIGNA Conference 2016 - Maura Reilly

1. The positive aspects family carers
identified with supporting a person
diagnosed with dementia
Maura Reilly
RGN, BNS, MSc Nursing (Dementia Care)

2. Background
 Approximately 50,000 family carers provide support to people
with dementia in Ireland
 Vast majority of people with dementia in Ireland live at home in
their community cared for by family and friends (Cahill et al.,
2012).
 Almost half the costs associated with dementia care is borne by
family carers (Connolly et al., 2012)

3. Family carers and dementia

4. Exploring the positive aspects family carers identify with
supporting a person diagnosed with dementia at home

5. Study design
Exploratory study
Appreciative Inquiry
 “Discover the strengths and generate new productive ways of
doing and being”(Mace et al., 2014)
 “reveals hidden life experiences” (Thomas et al., 2012)
 Strengths based approach
Data collection
In-depth interviews guided by a conceptual model of the positive
aspects of caregiving (Carbonneau et al. 2010)
 Quality of caregiver- care receiver relationship
 Feelings of accomplishment
 Meaning of their role in daily life

6. Sample - 7 family carers
(2 wives, 1 daughter, 3 sons, 1 husband)
Data analysis
Interpretative Phenomenological Analysis (IPA)
 IPA allow rigorous exploration of human experiences,
generating rich and detailed descriptions of people`s
experience of the event under investigation
 `step into the participant`s shoes`
 Arduous process

7. Overarching theme was `Home` – continuity of
home life “it`s lovely to have him at home”
Closer relationship “we`ve gotten closer”
Acceptance “it`s a big change”
Role commitment “I wouldn`t have it any other way”
Sense of mastery “we just do our best”
Sense of gratitude “couldn`t do it without the help”
Personal growth “made me a better person”
Findings

8. Home
“The place we call `Home` is special…there is an affection
and bond which value routine and familiarity, the personal
stamp of identity, the privacy and sanctuary of home, and
the social relationships built there” (Carroll et al., 2009 in
Places to Flourish)
Home and continuity of home life was a crucial finding
in this study
“happier in her own home”
Home was the better place to meet the changing needs of
their family member
“at his own pace, at his own time” and “you have to fit into
his time”.

9. Home
 picture

10. Relationships
Another key finding in the study was the value
family carers placed on maintaining the identity
and personhood of their relative with dementia as
well as the continuity of their relationship with
them.
“she is my mam…
I never think of myself as her carer…
I`m just her son”

11. Relationships

12. Other themes
• Acceptance “it`s a big change”, “take each day as it
comes”
• Role commitment “I wouldn`t have it any other way”
• Sense of mastery “we just do our best”
• Sense of gratitude “couldn`t do it without the help” and
“just like his own self”
• Personal growth “made me a better person”

13. Implications for practice/research
Support
Value
Training
Partners
Holistic
assessment

14. Going forward…
“People with dementia should be facilitated to remain
living in their own homes and to maintain existing roles
and relationships for as long as possible, supported by
the wider community along with primary, secondary
and community care services. As much support as
possible should be given to informal and family carers
who care for people with dementia at home”
National Dementia Strategy (2014)

15. Thank you