Meeting of the Genio Dementia Advisory Committee
27 February 2013
Ashoka Ireland, Dublin
Suzanne Cahill and Maria Pierce
DSIDC’s Living with Dementia Programme
School of Social Work and Social Policy
Trinity College Dublin
www.livingwithdementia.tcd.ie
Overview
•
Planned programme of evaluation
•
Progress to date
New estimates of dementia
Evaluation of respite services
•
Summary
Planned Programme of Evaluation
 Provide new national estimates of dementia prevalence
rates with particular reference to each of the four Genio
areas
 Evaluate new models of “respite” available through Genio
projects for PwD and their family caregivers
New Estimates of Dementia
 Provide an estimate of number of people with dementia
at each Genio site
 Methodology
 Desk based research
 Based on 2011 Census – to generate current number of
women and men with dementia by age and living in the
local community
 CSO population projections - to generate future number of
people with dementia in each area
 Progress to date on new estimates- an example
Example 1
Estimated number of people with dementia in
South Tipperary, 2011
Age groups
Total Population
Persons with dementia (estimated using
(Census 2011)
EuroCoDe (2009) age/gender-related dementia
prevalence rates)
Men
Women
Total
Men
Women
Total
30-59 years
18,419
18,015
36,434
37
18
55
60-64 years
2,381
2,347
4,728
5
21
26
65-69 years
1,867
1,809
3,676
34
25
59
70-74 years
1,438
1,468
2,906
46
56
102
75-79 years
1,054
1,189
2,243
74
90
164
80-84 years
707
914
1,621
103
150
253
85 years and over
435
893
1,328
101
304
405
398
664
1,064
Total
New Estimates of Dementia
Will:
 Provide a snapshot picture of dementia prevalence in each
locality
 Inform future planning of services in each area
 Allow comparison of expected numbers of people with
dementia in each locality with numbesr of PwD engaged with
Genio projects (based on local databases)
Challenges
 No Dementia Register
 Distinction between those:
 Known to Genio
 Registered with Genio but not receiving supports
 Availing of Genio supports
 Oversaturation of sample due to other Genio data collection exercises
 Consent
 From research point of view what is the unit of analysis?
 Person with dementia
 Family caregiver
 Formal caregiver
 Both
Planning - Scoping exercise
Methodology
Next steps
What are the Respite Activities?
South Tipperary
Kinsale
Stillorgan/
Blackrock
Mayo
In-Home Respite
Centre-based
Day Care
(Specialised)
Individualised
Respite
Boarding Out
Planned
In-home respite
Planned
Range of
individualised
respite supports
Planned
Crisis intervention
Home from Home
Planned
Home from Home?
Some questions
Steps involved in developing an innovative model of respite
What role does the Genio consortium play?
 Service provider
 Enabler
 Strategic partner
Who is “Respite” primarily targetting?
Person with dementia
 Family caregivers
 Both
Methodology: Mixed methods
 Qualitative measures - based on PwD (where possible) and FCs
own perceptions of the experiences and impact of respite on
daily life
 Quantitative measures –possible measures
quality of life
social engagement
delay in hospital admissions, delay in long term care placement
caregiver burden
Before-after comparison
 Comparison across sites
 Data from local Genio Databases
Includes:
 People with dementia (where possible) and family caregivers
 People completely new to new model (never used any service before)
 Those new to Genio but already familiar with more traditional services
 Those using Genio service only versus those using both Genio and other
formal respite services
 Those taking up respite/those refusing or leaving respite
Which Respite activities to evaluate?
 Need sizeable numbers getting similar services or sizeable
numbers at each site getting different services across sites
for comparative purposes
 Given some services already being rolled out, the pre-
intervention post- intervention service methodology may
not be possible or may need to wait for next tranche
 Developing new models of individualised respite
interventions takes time, but research ready to get
underway
Progress to date on Respite Evaluation
 Ethical approval granted – Research Ethics Approval Committee,
School of Social Work and Social Policy, TCD
 Literature review conducted and scales for outcome measures
identified
 Subject recruitment of participants needs to proceed
 Individuals commencing respite
Summary
 Complex area to research
 Local context – considerable variation
 General evaluation and specific evaluations
 Procedures for seeking consent
 Unwanted intrusion!
 Multiple sites, multiple outcomes, multiple stakeholders
 Validity and reliability