1. Towards resilience in family caregiving for people with dementia
ICHN Annual Conference
23rd May 2018 1

2. Part of the research arm of the National Dementia Strategy
Background
Part of the research arm of the National Dementia Strategy
Aim is to promote resilience in family carers of people with dementia
Objectives are:
to develop better understandings of resilience and the factors that can create better outcomes for family carers
Develop a ‘programme’ to enhance the resilience of family carers of people with dementia
Evaluate this ‘programme’

3. Brief overview of project
WKPG 1
WKPG2
WKPG3
Three year HRB funded project
Information Gathering
EnCaRe Project
Feasibility and Evaluation

4. Work Package 2
Aim: Using a PPI approach co-design a ‘programme’ to enhance the resilience of family carers of people with dementia
Approach: Established the EnCaRe Network Group of family carers of people with dementia in May 2017 and have been working since then on developing an Enhancing Carers’ Resilience (EnCaRe) Programme

5. The EnCaRe Network Group
7 members (+2 research staff)
4 men and 3 women
5 adult-child carers; 2 spousal carers
Mix of caring experiences
Currently the EnCaRe Network Group comprises:

6. EnCaRe Network Group Sessions
To date there have been a total of 11 sessions
2-3 hours long
Have heard from guest speakers on topics of interest to the group
Earlier sessions focused on concept of resilience as well as policy as it relates to Family Carers of PWD
Later sessions have focused on developing the EnCaRe programme

7. What has emerged?
Threats to the resilience of family carers of people with dementia:
Fragmented and hard to access information on caring for PWD
Inadequate peer and formal support networks

8. What has emerged? Information
Lack of information has been highlighted as a key challenge for family carers
Fragmented; FCI, CAI, ASI, HSE, Genio, Understand Together, GPs, PHNs etc.
Family Carers can’t find information they need
Why is this?
Undermines resilience of Family Carers of people with dementia

9. What has emerged? Peer Support
Our members highlighted the value of peer support in addressing feelings of isolation and as an important way of sharing information
Supports resilience

10. Take Care of Yourself What have we developed?
A “one-stop-shop” that uses carer stories to provide information and support to family carers of people with dementia
Called “Take Care of Yourself: Enhancing the Resilience of Family Carers of People with Dementia” it comprises online hub of video and standard content
Unique in that it is designed by family carers of PWD for family carers of PWD
Supports resilience

11. Take Care of Yourself
Family carers can identify information and supports they need at each stage of their journey
Expectation that this would be something they could dip in and out of; return to at different time points
Will explain the types of supports available at each stage and signpost user to relevant organisation/service etc.
Supports resilience

12. Potential to enhance dementia care practice
Implications for PHNs
We anticipate that the resource will provide Public Health Nurses with insights into the challenges and the needs of this particular client group
This resource has the potential to be a useful support tool that Public Health Nurses can direct family carers of people with dementia to
Potential to enhance dementia care practice
Supports resilience

13. Carers Perspective
Perspective of family carer of someone with dementia on potential role of this resource for PHNs
Supports resilience

14. Towards resilience in family caregiving for people with dementia
ICHN Annual Conference
23rd May 2018 14