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 Mrs Conor, wife caregiver, aged 57 years) Decision-making & Reactions Decision originally made a long time in advance of placement & in conjunction with other family members but not relatives with dementia.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. 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