Transcript Understanding Dementia

Long Term Residential Care for
people with dementia in Ireland.
New findings from a DSIDC
National Survey
Associate Professor Suzanne Cahill
Dr. Caroline O’ Nolan
Ms. Dearbhla O’ Caheny
Dr. Andrea Bobersky
Literature

Dementia- a key predictor of need for long term residential care and
many people with severe dementia require residential care (Butcher et
al., Caron, Ducharme & Griffith, 2006; Castle, 2001; Park, Butcher & Maas, 2004; Thorson &
Davis, 2000). 2001; Ryan & Scullion, 2000).
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Challenging behaviours, the absence of adequate community
supports and caregiver burden are all key factors contributing to the
breakdown of community care (Naleppa, 1997; Pinquart & Soerensen, 2003; Smith
& Crome, 2000).

On average people with dementia in residential care are older and
have more severe dementia than community dwellers (Meehan et al.,
2004; Schulz et al., 2004;

The average length of stay for people with dementia in residential
care is longer (Australian and New Zealand Society for Geriatric Medicine, 2011).
The International Context

Government policy in several overseas countries reflects a
commitment to planning more specialist long term residential care
for people with dementia (Alzheimer’s Disease International, 2013; Alzheimer Europe,
2013).
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These facilities are called different names, but each is underpinned
by similar person centred principles which promote autonomy,
choice, participation and empower the individual (Verbeek, 2011).
Dementia specific long term care:
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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).
Best Practice in Dementia Care
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Separate rooms for separate functions
Individual en suite bed rooms
Small scale domestic units (< 10 residents)
Staff are dementia trained
Meaningful activities (domestic and therapeutic)
Therapeutic gardens
Unobtrusive concern for safety
Control of noise and external stimuli (Judd, Marshall, Phippen,1998)
The Irish Context


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No database/register of dementia specific units.
No information of how many SCUs exist & where
they are located
No data on who the main providers are: private,
private and voluntary.
Lack of knowledge about the ethos and approach
to care and the extent to which facilities operate
comply with best practice.
A need to address this gap in our knowledge and
understanding and to develop a directory of SCUs.
Key Research Questions

Who are the main providers of long term residential care
to older people in the Republic of Ireland?

Who are the main providers (private, public and
voluntary) of long term specialist dementia care?

How many, and where are these SCUs located in
Ireland?
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To what extent do SCUs comply with best practice
principles?
Research Methods


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Population of complete coverage- all long stay
residential care facilities for older people in Ireland
(N=602)
Self administered questionnaire designed and pre
tested.
Two part questionnaire, Part A for all Nursing Homes
and Part B for Specialist Care Units only.
Data collected by this self administered questionnaire
and later by telephone interviews.
Response rate was 78%.
Table 1: Response rate
Method
Date
Self administered
questionnaire
circulated to 602
September and October
2013
Email contact made
with questionnaire
attached
November 2013
Telephone contact and
telephone interview
Two additional returns
January 2014
Total
Returned/Completed
Questionnaire
302
44
121
2
469
Figure 1: Nursing Home Population
by Provider Type
13%
Private
HSE
Voluntary
22%
65%
Number of SCUs
Figure 2: Number of SCUs by Provider
Type
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Analysis based on 54 self identified
SCUs providing care to 1034 PwD (2%
of population of PwD in Ireland or
4.5% of all people in long stay care).
Only 5% of all residents in these SCUs
aged less than 65 and only 1 person
had AD related to Downs’ Syndrome.
7%
30%
63%

66 respite beds were available across
54 SCUs – most of which (over two
thirds) were provided by the HSE.
Private
HSE
Voluntary
 Location
of
SCUs in Ireland
(N=54)
Table 2: Examples of Inequalities in
Service Provision across the Republic
of Ireland
LHO Area
No. of SCUs
LHO Area
No. of SCUs
Cork
13
Dublin North East
0
Cavan/Monaghan
5
Dublin West
0
Donegal
5
Dublin North
Central
0
Galway
5
Dublin North West
0
Carlow
0
Wicklow
0
Other Key Findings
 Size
of Units
 Physical Layout
 Admission Policy
 Activities
 Staff Training
 End of Life Policy
Size of Units
Figure 3: Size of SCUs based on Number of
Residents
4
9
5
7
16
13
Average number of residents: 19.1
10 or less residents
11-15 residents
16-20 residents
21-30 residents
31-40 residents
40-60 residents
The Physical
Environment
of Specialist
Care Units
Figure 4: The Provision of Single
Bedrooms by Provider Type (N=54)
23
14
All residents have their
own bedroom
Not all residents have
their own bedroom
11
4
2
0
Private
HSE
Voluntary
Admission Criteria used
Figure 6: Provider type and Admission
Criteria used (N=54)
32
12
Pre Admission Assessment
4
19
13
Clinical Diagnosis
4
Private
HSE
13
Behaviours that Challenge
8
1
6
Be independently mobile
11
2
Voluntary
Therapeutic
Gardens and
Meaningful
Activities
Therapeutic activities and Multi
Sensory Gardens
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Wide range of activities noted
including aromatherapy, music &
art therapy, Sonas program and
yoga.
Almost all (89%) of SCUs had a
therapeutic garden.
Some examples of creativity and
best practice:
“Some residents are retired
mechanics and teachers. We have
placed a car in the courtyard to
facilitate this and developed a
teachers corner with blackboard
and visits to schools for those
retired teachers”
Garden design from Nightengale House Care Home
London
Figure 7: Domestic Activities offered by
SCUs by provider type (N=54)
17
10
Private
26
5
Cooking Light Meals
5
5
HSE
Own Laundry
11
5
2
1
Voluntary
4
0
Gardening
None
Dementia Specific Training
Staff Training
 Nursing
 Health
 Other
Staff
Care Assistants
Staff
Figure 8 : Dementia Specific Training:
Nurses and HCAs (N=54)
15
19
14
20
Nurses Private
HCAs Private
Nurses HSE
HCAs HSE
Nurses Voluntary
HCAs Voluntary
6
10
No response
None
12
8
5
Some
All
2 2
22
Figure 9: Dementia Specific Training:
Other Staff (N=54)
18
18
16
13
14
12
All
9
10
Some
8
None
6
4
3
4
3
1
2
1
0
Private
HSE
Voluntary
2
End of Life Care Policy
End of Life Care Policy
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Majority (89%) provided
rich and detailed written
narratives on EOL
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Four key themes
emerged:
Involvement of family
members
Palliative Care
Dignity and Respect
Transfer
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Typical Responses
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“All residents should have
the right to privacy and
dignity at end of life.
Their wishes and beliefs
are recorded in their care
plan. If the residents is
unable to voice this, the
information is obtained
from the family or next of
kin and from the
resident’s life history”
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“An individualised
person-centred care
plan is documented
for all residents with
dementia. Decisions
regarding end of life
care are collaborative
and made in the best
interest of the family”
Transferring out of SCUs at End of Life
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Seven SCUs (14%) reported a policy of either always or
sometimes discharging residents with dementia from
SCUs at end of life. This practice of discharging
residents at end of life was more common in HSE SCUs.
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“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..”
Discussion

The survey identified 602 long stay residential care
settings across the ROI, most of which were operated by
private providers (65%).
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The survey also found 54 self identified SCUs who provide
specialist long term residential care to some 1034 men and
women with dementia.
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Within each SCU, results showed that numbers of
residents varied, but most SCUS are larger than what is
recommended by best practice guidelines and by Irish
Supplementary Standards for SCUs (HIQA, 2009,19: 10)
Discussion

The survey found that private operators are the dominant providers
even though no supplementary bed-rate is paid, and there is no
financial incentive to encourage necessary capital investment.
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Location of SCUs appears arbitrary and coherence in provision will
be dependent on policy reform.
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Some unexpected findings in relation to admission policies, respite
care provision and EOL practice in some HSE units.
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Despite the expected increase in prevalence of dementia in Ireland,
no significant expansion in supply is likely in the foreseeable future.
Conclusions

Expanding the supply of dementia specific beds in SCUs
may be dependent on the NTPF rates being more
realistically linked to dependency levels of residents
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Results also have implications for best practice and for
HIQA particularly in light of its current review of
residential care standards.
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These findings have been used to compile a guide on
SCUs for family caregivers and health service
professionals.
Acknowledgements
Thank you to all the Directors of
Nursing/Nurse Managers and staff
who assisted the DSIDC with this
survey, and who responded to our
request for information and gave us
their valuable time.
References
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Alzheimer’s Disease International (2013). Government Alzheimer Plans.
Retrieved from http://www.alz.co.uk/alzheimer-plans [Accessed
20/04/2013].
Alzheimer Europe (2013). Prevalence of dementia in Europe. Retrieved
from http://www.alzheimer-europe.org/Research/European-Collaborationon-Dementia/Prevalence-of-dementia/Prevalence-of-dementia-in-Europe
[Accessed 17/04/2013]
Australian and New Zealand Society for Geriatric Medicine (2011) Position
Statement No’s 9 and 10 The Geriatricians’ Perspective on Medical
Services to Residential Aged Care Facilities (RCFs) in Australia. (Revised
August 2011 )
Bobersky, A. (2013). “It’s been a good move”. Transitions into care: Family
caregivers’, persons’ with dementia, and formal staff members’ experiences
of specialist care unit placement (Unpublished Ph.D. thesis). Trinity College
Dublin, Ireland.
References
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Butcher, H. K., Holkup, P. A., Park, M., & Maas, M. (2001). Thematic
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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
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Castle, N. G. (2001). Relocation of the elderly. Medical Care
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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
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[Accessed 11/11/2011]
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References
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