Psychological interventions with

families of people with dementia:

the challenges

Georgina Charlesworth

UCL and NEFLT

The Dementias 10th February 2017

Overview of presentation

• What works?

• Are we providing what works?

• If not, why not?

• How can we enhance caregiver

support within constrained resources?

What works?

Resources for Enhancing Alzheimer’s Caregiver

Health: REACH II Translational studyCheung 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

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

The UK picture: policy

• Psychoeducation

• dementia care problem-

solving (individual, group,

telephone, internet);

• peer support,

• psychological therapy for

psychological distress,

including CBTReferral for advice,

information & support

NICE CG42

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

Advice, information and support

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.

The mixed emotions of caregivingReduce negative Increase positive

Depression Positive affect

Burden Confidence / Self-efficacy

Stress Resilience

Distress Coping

Anxiety Problem-solving

Anger Social support

Guilt Reciprocity

Grief Altruism

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

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)

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-caseN=109

caseN=69

Depression Baseline (HADS)

Deceased

In Care

At Home

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 adjustedN=69

AmbivalentN=40

DistressedN=43

IntenseN=26

Patterns of Positive and Negative Affect: Baseline

Deceased

In Care

At Home

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?