Presented by Prof Georgina Charlesworth in the Dementias 2017 conference which was held in the Royal College of General Practitioners in London on 9th and 10th February 2017.

1. Psychological interventions with
families of people with dementia:
the challenges
Georgina Charlesworth
UCL and NEFLT
The Dementias 10th February 2017

2. Overview of presentation
• What works?
• Are we providing what works?
• If not, why not?
• How can we enhance caregiver
support within constrained resources?

3. What works?

4. Resources for Enhancing Alzheimer’s Caregiver
Health: REACH II Translational study
Cheung et al (2014). Int J Geriatric Psychiatry. doi:10.1002/gps.4160
• Individualized, psycho-educational, skills-training programme
delivered on average 9 x 1h home and 3 x .5h individual telephone
sessions over 6 months
• Addresses multiple caregiving domains, including disease education,
home safety, CG health, emotional well-being, social support, and CR
behavioural problems (Belle et al., 2006)
• Outcomes:
– Sig. improvement in the perception of positive aspects of caregiving
– reduction in depressive symptoms, subjective burden, bother and
caregiving risks among caregivers
– abatement in behavioral problems among care recipients

5. Online CBT for carers
Emerging evidence for benefit
of internet interventions
Boots, et al. (2014) A
systematic review of
Internet‐based supportive
interventions for caregivers of
patients with dementia.
International Journal of
Geriatric Psychiatry 29.4: 331-
344

6. The UK picture: policy
• Psychoeducation
• dementia care problem-
solving (individual, group,
telephone, internet);
• peer support,
• psychological therapy for
psychological distress,
including CBT
Referral for advice,
information & support
NICE CG42

7. Strategies for relatives
(START; Livingston 2013; 2014)
• 8 session manual based coping intervention
delivered on 1 to 1 basis by psychology graduates
• Psychoeducation, behaviour & stress
management, maintenance plans
• Significant advantage for intervention carers for
anxiety and depression clinically & cost effective
at 2yr follow-up
• Implementation challenges

8. Advice, information and support

9. Stress: only part of the picture
Roth D.L., Fredman L.
& Haley W.E. (2015)
Informal caregiving
and its impact on
health: a reappraisal
from population-based
studies. The
Gerontologist 55 (2),
309–319.
Donnelly N-A et al
(2015) Systematic
Review and Meta-
Analysis of the Impact of
Carer Stress on
Subsequent
Institutionalisation of
Community-Dwelling
Older People. PLoS
ONE 10(6): e0128213.

10. The mixed emotions of caregiving
Reduce negative Increase positive
Depression Positive affect
Burden Confidence / Self-efficacy
Stress Resilience
Distress Coping
Anxiety Problem-solving
Anger Social support
Guilt Reciprocity
Grief Altruism

11. Theories of Mixed Emotion
• Bipolar opposites (Russell & Carroll, 1999)
• Independent constructs (Bradburn, 1969).
• Dynamic model of Affect (DMA; Zautra et al 1997)
• Robertson et al. (2007)
Negative Affect
Positive Affect
Well-
Adjusted
LOW
HIGH
Ambivalent
LOW
LOW
Distressed
HIGH
LOW
Intense
HIGH
HIGH

12. Demographics by category (N=178)
Demographics Well-adjusted
(high +, low -)
Ambivalent
(low +, low -)
Distressed
(low +, high -)
Intense
(high +, high
-)
N 69 40 43 26
Gender
N (%) female
44 (63.7%) 26 (65%) 31 (72.1%) 16 (61.5%)
Age
Mean (sd) years
66.2 (10.9) 67.1 (11.6) 70.0 (10.8) 63.69 (11.0)
Kinship
N (%) spouse
51 (73.9%) 25 (62.5%) 35 (81.4%) 14 (53.8%)
Duration of Care
Mean (sd) years
3.6 (2.7) 3.7 (2.9) 4.8 (3.6) 4.0 (3.3)

13. Baseline depression and PwD status at 2 years
• PwD: living at
home, in care, or
deceased
• Depression
(HADS) caseness
at baseline not
significantly
associated with
PwD status at 2
years
• x²(2) = .945, p =
.624
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
non-case
N=109
case
N=69
Depression Baseline (HADS)
Deceased
In Care
At Home

14. Baseline Mixed emotion & PwD status at 2 yrs
x²(6) =
15.43,
p = .017
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Well adjusted
N=69
Ambivalent
N=40
Distressed
N=43
Intense
N=26
Patterns of Positive and Negative Affect: Baseline
Deceased
In Care
At Home

15. Conclusions
• Old news: comprehensive and ongoing carer
support is associated with better outcomes for
family carers and people with dementia
• Current models of service in the UK make it difficult
to implement evidence-based practice
• Collaboration between services & sectors is vital
• Lack of positive aspects of caring (PAC) is not the
same as presence of stress/distress;
• Low PAC - important indicator of need for support?