Moving into longterm care
South County Dublin Alzheimer’s Café
11th
of September 2013, Bloomfield Care Centre
Andrea Bobersky, PhD
The School of Social Work and Social Policy
Trinity College Dublin
I’m going to talk about

Dementia and long-term care

Specialist care units (SCUs)

Placing relatives with dementia in SCUs
Moving into long-term care
may be part of the dementia
journey.
That move can occur
temporarily first (respite
care).
Specialist care units (SCUs) are one type of
long-term care setting designed to
specifically cater for people with dementia.
SCUs aim at:
-
-
improving quality of life
supporting individual needs
compensating for disabilities
maximising independence and self-esteem
being meaningful
(Aud et al., 2005; Marshall, 1998; Morgan & Stewart, 1999;
Sloane & Matthews, 1991)
SCUs are designed to be:
-
-
small-sized
homely
safe & unobtrusive
personalised
accessible (signage, cuing)
person-centred
(Brooker, 2004; Marshall, 1998; VanHoof etal., 2010)
DVD: “Clonakilty Unit ”
SCUs are a new feature of the Irish longterm care landscape.
We do not know how many there are but
suspect numbers are small and only
accessed by a small minority.
(Alzheimer’s Society of Ireland, 2007; Cahill, O’Shea, & Pierce,
2012; Zinn & Mor, 1994)
Placing relatives with dementia in SCUs
Topic of my Ph.D. thesis because little is known about
the individual’s experiences and that of family caregivers
of accessing SCUs, making and breaking placement
decisions, settling into SCUs in the short-term and
longer term, and adapting to new roles and
responsibilities in the short-term and longer term
What did I do:
-sampled three SCUs all located outside Dublin
-conducted in-depth interviews with nine residents four
weeks after SCU admission and six months later
-conducted in-depth interviews with nine family caregivers over the same period of time
-ran Focus Groups with 12 staff in the three SCUs
Findings
Reasons for admission

Feeling overburdened with extensive caregiving
responsibilities

Prior positive experiences with SCU respite
care

Safety concerns and inappropriateness of
informal care environment & nursing home and
hospital environment
“Here it’s like as if he has a home, which is
very good. They’ve everything, a garden.
There ’ s everything here for them,
everything. For the windows, they can
close the handle and the lights and they
can live a life [sighs, laughs].” Mrs Conor,
wife caregiver, aged 57 years)
Decision-making & Reactions

Decision originally made a long time in advance of placement
& in conjunction with other family members but not relatives
with dementia.

Bed offer came about suddenly and unexpectedly – the final
decision had to be rushed & made within one to three days.

Reactions - mixed emotions:
“There’s a huge relief grained with sadness. But it was a
huge relief, too. It really was.” (Mrs Breslin, niece caregiver,
aged 43 years)
Communicating news of the placement
 Most provided misleading information, halftruths or said nothing at all about the transfer.
 Fear of confusing or distressing their relative
was the main reason forwarded for not telling
the truth.
 Ethical dilemma for family caregivers, who did
not know how to best communicate news of
placement to their relative.
“Maybe I wasn’t, I should have been more
honest with her. I don’t know.” (Ms McCourt,
daughter caregiver, aged 52 years)
Settling into the SCU - Perspective of
persons with dementia
Feeling
Being
at home
at ease with placement
Enjoying
visits from family members & the company of other residents and staff
Enjoying
activities provided by SCUs (dancing, singing, going to mass)
“We have exercises there now after dinner today. Arms up, down, and out and out, in
and up [laughs], you know, just to keep your muscles, to keep them ailed.” (Mrs
McNamara, aged 80 years, interviewed at six months after placement)
Settling into the SCU – Family caregivers’
perspective
- Relaxed and contented settling-in
- Socialising with peers and staff members
- More physically active than before
- Improved communication skills
- Improved food intake and weight gain
- Improved motor skills, gait and independence in walking
- Disimprovements: Wanting-to-go-home behaviours, withdrawal, depression, loss of mobility
skills and eating problems/ weight loss; attributed to the progression of dementia.
Family caregivers’ adaptation to new
roles and responsibilities

Caring at a distance:
-Visiting
-Bringing relatives for brief stays in community
-Establishing partnerships in care with staff
-Monitoring the quality of care
-Protecting their relative’s rights and dignity
“I think it’s excellent and you can come in at
any time and you can see for yourself, which
I like.” (Mrs Forbes, daughter caregiver,
aged 50 years)

Re-establishing one’s life:
-More time for personal activities/ hobbies
-More time for other care/ work commitments
-More time for own family members including small children

Coping with paradoxical feelings:
-Guilt yet relief
-Bereavement yet their relative being alive
-Security yet uncertainty about placement
Discussion

Issues surrounding SCU placement discussed in this presentation are the exact
same issues which also pertain to placement in traditional nursing homes.

Long-term care placement is a complex experience:
-a challenge
-can improve quality of life and quality of care of family caregivers & their relatives
-means staying involved in the life and care of those placed

Need for more supports for family caregivers with :
- involving their relatives with dementia in placement decisions
- communicating the placement to relatives in more appropriate and inclusive ways
- coping emotionally with the placement

Need for more funding of SCUs
Acknowledgements
My thanks to the people with dementia,
their family caregivers and the SCU staff
members especially the Nurse Managers
who have participated in the research and
without their commitment and invaluable
input this project would not have been
possible.
Literature
Alzheimer Society of Ireland (2007). Dementia Manifesto 2007-2009. The Alzheimer Society of Ireland (Electronic resource). http://www.alzheimer.ie/eng/NewsEvents/Campaigns/Dementia-Manifesto-2007-2009/Dementia-Manifesto
Aud, M. A., Parker-Oliver, D., Bostick, J., Schwarz, B. & Brent Tofle, R. (2005). Social model care units for persons with dementia. The Missouri demonstration
project. Alzheimer’s Care Quarterly 6(4), 306-315 (57)
Brooker, D. (2004). What is person-centred care in dementia? Reviews in Clinical Gerontology, 13, 215-222.
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person ward environment to a new dementia care unit.. HSE/ Cork
Sloane, P. & Matthews, L. (1991). Dementia units in long-term care. Baltimore, USA: Johns Hopkins University Press.
Van Hoof, J., Kort, H. S. M., van Waarde, H. & Blom, M. M. (2010). Environmental interventions and the design of homes for older adults with dementia: An
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Zinn, J. S. & Mor, V. (1994). Nursing home special care units: Distribution by type, state, and facility characteristics. Gerontologist, 34 (3), 371-377
Thank you!
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Bobersky, A. (2013). `Moving into long-term care.`