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30/04/2015 Overview Alterna(ve Models to Tradi(onal Nursing Homes for People with Demen(a in Ireland: Findings from an Irish Na(onal Survey Associate Professor Suzanne Cahill, Dr Caroline O’ Nolan, Ms Dearbhla O’ Caheny & Dr Andrea Bobersky, DSIDC and Trinity College Dublin Symposium 1tled – Alterna1ve Living Arrangements for People with Demen1a: Crea1ng a Homelike Atmosphere Convenors: Professor Karin Wolf-­‐Osterman & Sandra Zwakhalen IAGG-­‐ ER 8th Congress April 23rd to 26th 2015   Popula1on ageing and demen1a in Eire   Interna1onal Context   Ra1onale for Study   Key findings   Discussion   Conclusion The Irish Context  
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About 48,000 Irish people es1mated to have demen1a About 16,000 probably live in long stay residen1al care Residen1al care in Ireland has tradi1onally focused on physical care and not on personhood, quality of life and end of life (O’Shea, 2013) About two thirds of all people in residen1al care have some form of demen1a although it o\en remains undetected and not diagnosed (Cahill et al, 2011) Irish Na1onal Strategy on Demen1a launched Dec 2014 1 30/04/2015 Prevalence and Projec(ons of PwD in Long Stay Residen(al Care in Ireland +
Irish landscape Hotel style Nursing Home ‘Hotel’ style
Refurbished house Estimated population of people with dementia in long-stay
residential care, 2006-2041 (Pierce, 2012)
Number
160,000
140,000
Estimated population
of PwD
120,000
Psychiatric Ins1tu1on 100,000
80,000
60,000
Estimated number of
PwD in long-stay
residential care
40,000
20,000
0
2006
2011
2016
2021
2026
2031
2036
2041
Year
Residen(al Care for PwD in Ireland up to recently The Interna(onal Context  
Shi\ in models of long term care for PwD occurring since the 80’s from tradi1onal model with a focus on pathology and deficits to bio-­‐
psycho-­‐social model with a focus on autonomy, engagement and par1cipa1on  
Trend started in Sweden but now established in many other North European & North American countries and reflected in Na1onal Demen1a Strategies   US, 17%   Norway and Sweden about 20%,   Luxembourg 40%   The Netherlands 25%, with a commitment to increase to 33% by 2015 (De Lange et al., 2011).  
From traditional model with a focus on pathology and deficits to biopsycho-social model with a focus on autonomy, engagement and
participation
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Growing body of research pointing to benefits gained from such
approach (Lawton ,1983; Day et al, 2000; Marshall 2001; Calkins, 2009, Verbeek,
2009)
Features of Best Prac(ce  
Literature Findings on Benefits of SCUs Separate rooms for separate func1ons  
Findings somewhat equivocal (Verbeek,2009)  
PwD in SCUs less likely to have bed rails, use catheters and more likely to have toilet plans/training for incon1nence problems Less likely to have pressure ulcers, hospitalisa1on, pyschotropic drugs, weight loss but more likely to have falls  
Individual en suite bed rooms  
Small scale domes1c units (< 10 residents, ideally 6 to 8)  
Staff are demen1a trained  
Meaningful ac1vi1es (domes1c and therapeu1c)  
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Therapeu1c gardens  
Unobtrusive concern for safety  
Control of noise and external s1muli (Judd, Marshall, Phippen,1998)
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Some residents regain former skills, improved mood and ea1ng and sleep pajerns, increased func1onal independence, new friendships (Bobersky and Cahill, 2011; Luo et al. 2010; Myers et al., 2007; Verbeek et al., 2009; 2011; Zadelhoff et al., 2011) 2 30/04/2015 Irish Na(onal Demen(a Strategy launched December 2014 Research Ques(ons What propor1on of NHS have SCUs & how many intend establishing this model of care in near future?  
Who are the key providers of segregated demen1a care in Ireland?  
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“There should be a range of long term care op1ons designed to comply with best prac1ce architectural principles and staffed by competent and skilled personnel trained to address the complex and unique needs and preferences of people with demen1a of all aged”, (DOH, 2014, p 24)
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Where are Specialist Care Units located?  
What propor1on of PwD do they cater for? How well do SCUs comply with best prac1ce principles and features?  
Research Methods  
Popula1on of complete coverage-­‐ all long stay residen1al care facili1es for older people in Ireland (N=602)  
Self administered ques1onnaire pre tested and distributed to all nursing homes  
Follow up emailed ques1onnaire  
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Key Findings  
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Numbers of Units: Only 54 (11%) of all residential care was
dementia specific small scale and domestic like
Numbers who Plan developing Units: Only 57 (14%)
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Numbers of PwD: A total of 1034 PwD representing only 2% of all
PwD in Ireland or 4% of all PwD in long stay care lived in these
facilities
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Main Providers of Care: Two thirds are privately operated
Follow up telephone interview  
Residents aged less than 65: Only 54 people with YOD (9%) of the
total population of YOD in residential care were living in SCUs
Total number of respondents 469 reflec1ng response rate of 78%.  
Location: By far the majority of SCUs were located in country town
or rural hinterlands, only 8 located in cities
Key Findings (2)  
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Respite Beds: Total of 65 residen1al respite beds for the 30,000 people known to have demen1a in the community Wai(ng (mes: Huge variability – very lengthy wait-­‐lists in Leinster where significantly fewer SCUs Admission Policies: Lack of consistency across providers types Physical environment: Private providers more likely to offer residents their own individual bedroom (67%) compared with HSE operated units where only 12% had own rooms. Size of SCU: Average number of residents 19 3 30/04/2015 Figure 3: Size of SCUs based on Number of Residents 4
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9
Key Findings (3)  
Staff Training: Significantly larger propor1on of private providers reported all nursing & home care ajendants had undergone demen1a specific training. 10 or less residents
11-15 residents
7
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Meaningful Ac(vi(es: All reported good provision of therapeu1c ac1vi1es but 20% failed to provide opportuni1es for domes1c ac1vi1es. Some facili1es par1cularly crea1ve and tailored ac1vi1es to residents’ biographies  
End of Life Policy: Vast majority provide end of life care but a small few (N=7) o\en or always transfer people dying with demen1a out 16-20 residents
21-30 residents
16
31-40 residents
40-60 residents
13
Average number of residents: 19.1 Transferring out of SCUs at End of Life  
“Following assessment and consultation with the next of kin, transfer
to a long stay unit (occurs) where end of life care can be given with
access to the home care team if required”
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“As residents move to a stage of dependency we maintain that as it
is a dementia unit, that they are prepared (family members) for the
move to another unit in our facility..”
Conclusions
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Findings raise many ques1ons about the role of SCUs in rela1on to long term care provision for PwD, size of such units, their cost effec1veness, payments for care  
An Irish Na1onal Demen1a Strategy has recently been launched & new es1mates generated on the prevalence of demen1a in Ireland based on 2011 Census data.  
Combining this data with findings from this research could provide useful informa1on for service planners and policy makers  
These findings have been used to compile both a detailed report and consumer guide on SCUs for family caregivers and health service professionals. Discussion  
Care in SCUs is s1ll a rare feature of the Irish long term care landscape accoun1ng for only 11% of total long-­‐term care provision  
Loca1on of SCUs appears arbitrary and limited choice available beyond the tradi1onal nursing home model available  
Some unexpected findings in rela1on to admission policies, respite care provision and EOL prac1ce in some HSE units.  
Despite the expected increase in prevalence of demen1a in Ireland, no significant expansion is likely in the foreseeable Two New Publica(ons based on the Na(onal Survey (I) A Detailed Report (2) Booklet for Caregivers 4 30/04/2015 Acknowledgements
“Real care does not reside in the building or its facili1es, but rather in the spirit of the people within” (Irish Times, Alan Gilsenan,2010)  
Professor Rose Anne Kenny  
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Dr. Maria Pierce  
John Linehan  
Associate Professor Hilde Verbeek References
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References
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De Lange, J., Willemse, B., Smit, D., & Pot, A. M. (2011). Housing with care
for people with dementia in the Netherlands [Powerpoint slides]. Retrieved
from
http://www.socialwork-socialpolicy.tcd.ie/livingwithdementia/assets/pdf/
JacominedeLange.pdf [Accessed 11/11/2011]
HIQA (2009). National Quality Standards for Residential Care Settings for
Older People in Ireland. Health Information and Quality Authority, Dublin
and Cork.
Judd, S., Marshall, M., & Phippen, P. (1998) 'Design for Dementia‘. London,
United Kingdom: Hawker.
Meehan, T., Robertson, S., Stedman, T., & Byrne, G. (2004). Outcomes for
elderly patients with mental illness following relocation from a stand-alone
psychiatric hospital to community-based extended care units. Australian and
New Zealand journal of psychiatry, 38(11-12), 948-952.
Dr. Suzanne Timmons  
Alzheimer’s Disease Interna1onal (2013). Government Alzheimer Plans. Retrieved from hjp://www.alz.co.uk/alzheimer-­‐plans [Accessed 20/04/2013]. Alzheimer Europe (2013). Prevalence of demen1a in Europe. Retrieved from hjp://www.alzheimer-­‐europe.org/Research/European-­‐Collabora1on-­‐
on-­‐Demen1a/Prevalence-­‐of-­‐demen1a/Prevalence-­‐of-­‐demen1a-­‐in-­‐
Europe [Accessed 17/04/2013] Australian and New Zealand Society for Geriatric Medicine (2011) Posi%on Statement No’s 9 and 10 The Geriatricians’ Perspec%ve on Medical Services to Residen%al Aged Care Facili%es (RCFs) in Australia. (Revised August 2011 ) Bobersky, A. (2013). “It’s been a good move”. Transi1ons into care: Family caregivers’, persons’ with demen1a & formal staff members’ experiences of SCU placement (Unpublished Ph.D. thesis, TCD). Majhew Gibb  
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Tadhg Daly Nursing Home staff References
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Butcher, H. K., Holkup, P. A., Park, M., & Maas, M. (2001). Thematic
analysis of the experience of making a decision to place a family
member with Alzheimer's disease in a special care unit. Research in
nursing & health,24(6), 470-480.
Cahill S, O’Shea E and Pierce M (2012) Creating excellence in
dementia care: A research review for Ireland’s dementia strategy.
Caron, C. D., Ducharme, F., & Griffith, J. (2006). Deciding on
institutionalization for a relative with dementia: the most difficult
decision for caregivers. Canadian Journal on Aging, 25(2), 193-206.
Castle, N. G. (2001). Relocation of the elderly. Medical Care
Research and Review, 58(3), 291-333.
References
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Naleppa, M. J. (1997). Families and the institutionalized elderly: A
review.Journal of Gerontological Social Work, 27(1-2), 87-111.
Park, M., Butcher, H. K., & Maas, M. L. (2004). A thematic analysis of
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family member with dementia in a long‐term care facility. Research in
nursing & health, 27(5), 345-356.
O'Shea, E., & O'Reilly, S. (1999). An action plan for dementia. Dublin:
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5 30/04/2015 References
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Schulz, R., Belle, S. H., Czaja, S. J., McGinnis, K. A., Stevens, A., &
Zhang, S. (2004). Long-term care placement of dementia patients
and caregiver health and well-being. Jama, 292(8), 961-967.
Smith, A. E., & Crome, P. (2000). Relocation mosaic-a review of 40
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Verbeek, H (2011) Redesigning dementia care. An evaluation of
small scale, homelike care environments (Unpublished Ph. D
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