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 PierceDSIDC’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 dementiaEvaluation 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 1Estimated number of people with dementia in

South Tipperary, 2011Age groups Total Population

(Census 2011)

Persons with dementia (estimated using

EuroCoDe (2009) age/gender-related dementia

prevalence rates)

Men Women TotalMen 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

Total 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)

ChallengesNo 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?

Kinsale

Centre-based Day Care

(Specialised)

South Tipperary

In-Home Respite

Stillorgan/Blackrock

IndividualisedRespite

Mayo

Boarding Out

Planned Crisis interventionHome from Home

PlannedIn-home respite

Planned Home from Home?

PlannedRange of

individualised respite supports

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 caregiversBoth

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

placementcaregiver 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