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 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

1. Estimates of dementia

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 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

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

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

How is “respite” conceptualized & operationalized?

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?

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