Table 1 Study Characteristics

 Hilgeman et al. (2014) [17]

United States

To examine the impact of the Preserving Identity and Planning for Advance Care (PIPAC) intervention on coping strategies in early stages of dementia.

Two-group randomized controlled block design.

Qualitative and quantitative

Yes,

a minimal support-based intervention focused on empathic listening and supportive reflection through two phone calls (10–30 min.). When no phone was available, brief face-to-face interactions were used.

People with early-stage dementia aged 55 and older and their family members/friends.

Depression and anxiety symptoms; quality of life; meaning in life; emotional support; health-related quality of life; perceptions of uncertainty in choosing future medical care; coping strategies for managing memory problems.

PIPAC group: 10 dyads. People with dementia: Mean age 80.8 (SD: 4.5); 7 female; mean years of education 13.9 (SD 3.4). Family contacts mean age 66.2 (SD: 11.3); 6 female; mean year of education 15.8 (SD 1.8).

Minimal support group: 7 dyads and 1 person with dementia alone. People with dementia: Mean age 84.3 (SD: 8.0); 6 female; mean years of education 16.8 (SD 3.2). Family contacts mean age 68.6 (SD: 11.7); 5 female; mean year of education 16.3 (SD 1.8).

Good

(35)

 Quinn et al. (2016) [18]

United Kingdom

To explore the feasibility of a self-management intervention for people with early dementia. To make a preliminary assessment of whether the intervention enhanced participants’ sense of self efficacy. To explore the cost of setting up and delivering the intervention.

Two group randomized controlled trail.

Qualitative and quantitative

Yes,

routine memory clinic services (nurse-led review and access to services such as psychiatry, psychology, occupational therapy, social services)

People with early-stage dementia and their family carers.

General self-efficacy measured with GSES; anxiety and depression measured with HADS; clinical outcomes measured with CORE-OM; health-related quality of life measured with the EQ-5D-3L; sense of capability-related well-being measured with ICECAP-O; intervention acceptability (attrition, adherence, satisfaction); costs of setting up and running the intervention.

24 people with dementia and their family carers (13 in intervention condition and 11 in control condition).

Intervention group

People with dementia: Mean age 75.2 (SD: 8.7); 3 female. Carers: Mean age 67.0 (SD: 15.0); 10 female.

Control group

People with dementia: Mean age 76.1 (SD: 8.5); 3 female.

Carers: Mean age 66.2 (SD: 16.6); 9 female.

Good

(33)

 Song et al. (2019) [19]

United States

To adapt an efficacious Advanced Care Planning intervention, SPIRIT (sharing patient’s illness representations to increase trust), to be suitable for people with dementia and their surrogates.

To assess whether people with dementia could meaningfully participate in the modified SPIRIT intervention and complete the outcome assessments.

Randomized controlled trial.

Qualitative

Yes,

the modified version of SPIRIT for people with dementias was tested. A remote and in-person version were compared.

People with (mild or moderate) dementia and their surrogates.

Quantitative preparedness outcomes in the person with dementia and the surrogate:

Dyad congruence in decision making, patient decisional conflict, and surrogate decision making confidence.

Feasibility of SPIRIT - 1) tracking technical difficulties during SPIRIT remote sessions, 2) scoring PWD’s articulation of end-of-life care preferences, 3) rating their level of recollection of the SPIRIT session, and 4) tracking measures and items that PWDs found difficulty to understand.

Acceptability and impact of SPIRIT - semi structured interview guide with each member of the dyad regarding their experience, perceived impact, facets that were experienced helpful or unhelpful, and suggestions for improvement.

23 people with dementia and their surrogates (11 in the remote group and 12 in the in-person group).

Remote (intervention) group:

People with dementia: Mean age 74.7 (SD: 7.9); 5 female.

Surrogates: Mean age 69.7 (SD: 9.8); 7 female.

Control (in-person) group:

People with dementia: Mean age 73.7 (SD: 7.5); 7 female.

Surrogates: Mean age 63.1 (SD: 11.8); 8 female.

Fair (23)

 Stockwell-Smith et al (2018) [16]

Australia

To evaluate the effect of EDDI (Early Diagnosis Dyadic Intervention) a targeted community-based psychosocial intervention on self-efficacy outcomes for dementia dyads (person with dementia and their family carer) living with early-stage dementia.

Cluster randomized controlled design

Quantitative and qualitative.

Yes,

control participants were provided with two information manuals.

Dyads of a person with early-stage dementia and their family carer.

Outcome measures was the self-rated self-efficacy (questionnaire). Data was collected at baseline, post-intervention (4 months’ postbaseline for the control group), and 4-month post-intervention.

Post-intervention evaluation interviews were conducted with the dyad and the interventionist.

88 people with dementia and their surrogates (45 in the intervention group and 43 in the control group).

Intervention (EDDI) group:

People with dementia: mean age 77.2 (SD 7.7); 14 female.

Carers: mean age 68.9 (SD 10.9); 37 female.

Control group:

People with dementia: mean age 78.5 (SD 6.4); 24 female.

Carers: mean age 69.0 (SD 11.6); 34 female.

Good

(28)

 Orsulic-Jeras et al. (2016) [20]

United States

To describe the implementation of the Support, Health, Activities, Resources, and Education (SHARE) intervention, its unique core strategies and the potential impact SHARE can have on care planning for people with dementia and their families.

Before-and-after design.

Qualitative and quantitative

No

Dyads of person with early-stage dementia and their family carer.

Discussion of care needs; acknowledgement of the importance of a plan of care that takes into account the wishes of the person with dementia; acceptability of the program; feasibility of the program; decision-making and care-planning skills; benefits and drawbacks.

40 dyads: People with dementia (mean age 74.2 (SD: 8.7) 23 female) and caregivers (mean age 61.3 (SD: 15.8) 34 female).

Fair

(27)

 Murphy & Oliver (2013) [21]

United Kingdom

To explore whether Talking Mats could help people with dementia and family carers feel more involved in decisions making in their daily lives.

Crossover design.

Qualitative and quantitative

No

Dyads of person with dementia and their family carer.

Involvement Measure score; personal care; getting around; housework and activities.

18 dyads of person with dementia and family carer. Three participants were judged to have early-stage dementia, 13 moderate stage and 2 late-stage. Of the 18 family carers, 13 were female, with a mean age of 69 years (range 44–89).

Good

(33)

 Poppe et al. (2013) [22]

United Kingdom

To explore the acceptability of discussing advance care planning (ACP) with people with memory problems and mild dementia shortly after diagnosis.

One group post-test design.

Qualitative

No

People with mild dementia; family carers; staff from memory service and a community mental health team for older people.

Among people with dementia and carers: Issues around diagnosis, reason for ACP, evaluation of ACP discussion.

Among staff: The ACP tool, the ACP discussion, barriers and facilitators for ACP, required skills and competencies.

12 people with dementia

mean age 78.8 (SD: 6.2); 8 female; 6 living alone.

8 family carers, 4 female.

6 staff members from a memory clinic and a community mental health team.

Fair

(27)

 Boyd (2007) [9]

United Kingdom

To evaluate whether the Values History Form (VHF) can be used as a practical tool to empower people with dementia, should their condition deteriorate and they are no longer able to represent their views.

Process evaluation.

Qualitative

No

People with early-stage dementia and their potential carers as well as health care professionals (social workers, psychiatrists, GPs, CPNs, residential care staff, district nurses, nursing home staff and voluntary care managers).

Ability to discuss the future;

Ability to discuss and record values; ideas about the VHF;

Practical issues of engaging with the VHF.

Phase 1) 12 dyads of people with dementia (mean age 75.3 (SD: 7.1); 5 female) and family carers. Also 40 professionals working in dementia care.

Good

(34)

 Martin et al. (2015) [23]

United Kingdom

To evaluate the experiences with a self-management program and to perform an initial process evaluation.

Process evaluation.

Qualitative

No

People with early-stage dementia and course tutors.

Experiences; perceived benefits of the intervention;

most/least useful program activities.

6 people with dementia living at home (mean age 68.9 (SD: 8.98); 3 female; mean dementia diagnosis of 3.5 years (SD: 3.5) and 2 course tutors.

Good

(30)

 Whitlatch et al. (2006) [15]

United States

To describe the Early Diagnosis Dyadic Intervention (EDDI) protocol, to report on the program’s acceptability, feasibility and usefulness and to discuss future applications of the protocol.

Feasibility study.

Quantitative

No

Dyads of person with early-stage dementia and primary responsibility family carer living in the same community with a close kin or kin-type relationship. Counselors were invited as well.

The measures of feasibility and acceptability included (a) the number of sessions attended by the caregiver and care receiver and the amount of time spent in the EDDI program; (b) care- givers’ and care receivers’ ratings of treatment satisfaction to assess the acceptability of the intervention and ratings by caregivers of their counselor’s effectiveness and enthusiasm; and (c) counselors’ ratings of their own enthusiasm; effectiveness; whether session goals were met.

2 counselors completed all nine sessions.

20 dyads completed all nine sessions.

Fair

(26)