1. An Evaluation of the Genio Dementia Programme: Update from the Living with Dementia Programme
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

2. Overview Planned programme of evaluation Progress to date
New estimates of dementia
Evaluation of respite services
Summary

3. 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

4. 1. Estimates of dementia

5. 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

6. Example 1 Estimated number of people with dementia in
Example 1 Estimated number of people with dementia in South Tipperary, 2011
Age groups
Total Population
(Census 2011)
Persons with dementia (estimated using EuroCoDe (2009) age/gender-related dementia prevalence rates)
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

7. 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)

8. 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

9. 2. Evaluation of Respite services
Planning - Scoping exercise
Methodology
Next steps

10. How is “respite” conceptualized & operationalized?

11. What are the Respite Activities?
South Tipperary
In-Home Respite
Kinsale
Centre-based
Day Care
(Specialised)
Stillorgan/
Blackrock
Individualised
Respite
Mayo
Boarding Out
Planned Crisis intervention
Home from Home
Planned
In-home respite
Planned
Range of
individualised
respite supports
Planned
Home from Home?

13. 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

14. 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

15. 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

16. 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

17. 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

18. 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