1. Joint work with Healthwatch Norfolk: Dementia Research
Prof Eneida Mioshi
Chair in Dementia Care
Faculty of Medicine and Health Sciences

2. Understanding and managing carer burden in dementia
Prof Eneida Mioshi
Chair in Dementia Care
Faculty of Medicine and Health Sciences

3. Carer burden
high level of stress that may be experienced by people who are caring for another person
(usually a family member)
with some kind of illness
Terminology
How is it in FTD?

4. Do they affect family carers in different ways?
Early onset dementia Vs
Late onset dementia
Do they affect family carers in different ways?

5. Understanding burden
Carer stress higher in carers of young onset dementia patients
Stress does not change with nursing home placement
A common factor in both young and late onset dementia: social network can help manage stress
Mioshi et al, DGCD 2009

6. Understanding burden: what happens with disease progression?
Burden increases as dementia progresses
Mioshi et al, ADAD, 2012

7. Understanding burden: what happens with disease progression?
Carer burden changes with disease progression vary with disease subtype
Hsieh et al, J Alzhei Disease 2015

8. Is carer burden different between spouse-carers and children-carers?
Stage of dementia
Changes in relationship:
less caring
Burden on spouse
Carer depressive symptoms
Burden on children
Carer depressive symptoms
Kaizik et al, under review

9. Social Support Groups in Norfolk Impact of dementia on carers
~200 carers attend support groups across Norfolk
Recruitment target: 50/150
Current: 36/50
20 groups have been surveyed (support groups, cafes and pabulum groups)
Attendance at groups varies widely but uptake has been good, of the estimated 150 eligible carers who attend we are hoping to survey 50 and are well on track to meet and exceed that target.
Recruitment is now focusing on carers who are not attending groups.
A common factor in both young and late onset dementia: social network can help manage stress

10. Preliminary data Total % (n=47) Attendees % (n=36)
Non attendees % (n=11)
Gender
Male
26.1 20
45.5
Female
73.9 80
54.5
Age
18-29
30-49
50-69
25.7
27.3
70-79
43.5
42.9
80+
30.4
31.4
Care hours
0-2 hrs
2.2
2.9
hrs
6.5
8.6
hrs
5.7
9.1
21-40 hrs
4.3
40-80 hrs
15.2
81+ hrs
65.2
57.1
90.9
Note:
Different sample size in each group. Attenders / non attenders
No under 50s. Chi square age * attendance X² (2) = 0.68, p›0.05 (p=0.966)
Gender skewed to female attenders, more equal in non attenders.
Chi square: gender * attendance X ²(1)= 2.81, p= (p›0.05)
Majority spousal, primary carers

11. Promoting Resilience in Family Carers Resilience, social support and wellbeing CARIS: carers and resilience intervention study
Sue Jones
PhD candidate
Admiral nurse
Resilience

12. Promoting Resilience in Family Carers Resilience, social support and wellbeing CARIS: carers and resilience intervention study
Sue Jones
PhD candidate
Admiral nurse
Social support

13. Take home message
Carer burden in dementia is different depending on dementia subtype, e.g. early onset vs late onset
Dementia progression has major impact on carer burden for spouses
Dementia subtypes: different impact on family carers
Carers who attend social support groups are mostly female; have higher scores in resilience; spend fewer hours per week caring than those not attending
Chicken or egg? How do we reach those who do not attend groups?

14. All research participants: patients and their family carers
Acknowledgements
All research participants:
patients and their family carers