Moving into long-term care

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Moving into long-term care

• South County Dublin Alzheimers Café
• 11th of September 2013, Bloomfield Care Centre
• Andrea Bobersky, PhD
• The School of Social Work and Social Policy
• Trinity College Dublin

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Im going to talk about

• Dementia and long-term care
• Specialist care units (SCUs)
• Placing relatives with dementia in SCUs

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• Moving into long-term care may be part of the
  dementia journey.
• That move can occur temporarily first (respite
  care).

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• Specialist care units (SCUs) are one type of
  long-term care setting designed to specifically
  cater for people with dementia.

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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)

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SCUs are designed to be

• small-sized
• homely
• safe unobtrusive
• personalised
• accessible (signage, cuing)
• person-centred
• (Brooker, 2004 Marshall, 1998 VanHoof etal.,
  2010)

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• DVD Clonakilty Unit

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• SCUs are a new feature of the Irish long-term
  care landscape.
• We do not know how many there are but suspect
  numbers are small and only accessed by a small
  minority.
• (Alzheimers Society of Ireland, 2007 Cahill,
  OShea, Pierce, 2012 Zinn Mor, 1994)

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Placing relatives with dementia in SCUs

• Topic of my Ph.D. thesis because little is known
  about the individuals 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

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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
  care-givers over the same period of time
• -ran Focus Groups with 12 staff in the three SCUs
  

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Findings
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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

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• Here its like as if he has a home, which is
  very good. Theyve everything, a garden. Theres
  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)

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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
• Theres a huge relief grained with sadness. But
  it was a huge relief, too. It really was. (Mrs
  Breslin, niece caregiver, aged 43 years)

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Communicating news of the placement

• Most provided misleading information, half-truths
  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.

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• Maybe I wasnt, I should have been more honest
  with her. I dont know. (Ms McCourt, daughter
  caregiver, aged 52 years)

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Settling into the SCU - Perspective of persons
with dementia

• Feeling at home
• Being 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)

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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.

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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 relatives rights and dignity

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• I think its 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)

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• Re-establishing ones 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

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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

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Acknowledgements
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• 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.

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Literature

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• Aud, M. A., Parker-Oliver, D., Bostick, J.,
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• Brooker, D. (2004). What is person-centred care
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• Cahill, S., OShea, E. Pierce, M. (2012).
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• Zinn, J. S. Mor, V. (1994). Nursing home
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• Thank you!