Table 2 Intervention Characteristics

Boyd (2007) [9]

Values History Form (VHF)

To empower people with dementia, enabling their voices to be heard should they no longer be able to articulate their wishes.

Values History is an approach during which core values and beliefs are identified that are important to the individual with a terminal illnesses as a basis for medical treatment should they lose capacity.

The Values History Form (VHF) is filled out with the person with dementia and the family carer during five weekly interviews.

Community-dwelling people with early-stage dementia and their family carer

Interviews with individual dyads

Weekly interviews during five weeks

Researcher (psychiatric nurse)

Hilgeman et al. (2014) [17]

PIPAC

Maximize coping and enhance quality of life and well-being in the early stages of dementia.

Four sessions combining identity-maintaining activities (making a product such as a scrapbook or memory box through reminiscing activities) with an advance care planning (ACP) discussion (‘what it has meant to live well in the past’ and ‘what it will mean to live well in the future.’).

Community-dwelling people with early-stage dementia 55 years or older.

Family contacts were where invited to, but this was not required.

In-home sessions with the person with dementia (and the informal caregiver)

Four in-home sessions during 4 to 6 weeks

Trained interventionist

Martin et al. (2015) [23]

Self-management intervention

To (a) help participants to communicate their feelings to family/friends; (b) feel more able to maintain an active lifestyle; (c) improve the experienced quality of life; (d) improve awareness of strategies for coping with changing memory and (e) improve knowledge in how to access relevant information.

The program addresses relationship with family, maintenance of an active lifestyle, psychological well-being, techniques to cope with memory changes and information about dementia. Sessions included relaxation, goal setting, action planning, goal feedback, problem solving, identifying personal strengths and maintaining a focus on engaging in pleasurable activities.

People with early-stage dementia

Group sessions (guided by a tutor’s manual)

Handout

Mid-week phone calls

Weekly group sessions of 2.5 h during six weeks.

co-delivery: Lay person and clinical professional tutors.

Murphy & Oliver (2013) [21]

Talking Mats

To support people with dementia and their carers in interacting with each other.

Talking Mats uses a simple system of picture symbols, placed on a textured mat, that allow people to indicate their feelings about various options within a topic by placing the relevant image below a visual scale. Sessions were held with dyad of person with dementia and their family carer to discuss issues around daily living by the use of Talking Mats.

People in all stages of dementia and their family carer

Tool to support interaction between person with dementia and their professional and informal carers.

Frequency and duration can be adapted ‘to the dyads needs.

For the study, two in-home sessions were organized.

No trainer. For the study, a researcher facilitated discussion

Orsulic-Jeras et al. (2016) [20]

Support, Health, Activities, Resources, and Education intervention (SHARE)

To encourage care dyads to “work together” to discuss care value and preferences, address sensitive topics through education, strengthen communication skills, and ultimately develop a plan of care that can be adjusted as needed throughout the care path.

SHARE is a counseling-based care-planning intervention. It is based upon assessing and documenting care values and preferences for future care. The sessions are supported by a care values magnet board.

Dyads of people with early-stage dementia and their family carer

Individual dyad sessions.

Seven SHARE sessions were held over a period of four months.

Trained SHARE counselors

Poppe et al. (2013) [22]

Advanced Care Planning in Early Dementia Tool (ACP-ED)

To structure discussions between professional carers and people with dementia about advanced care planning (defined as the process of discussing an individual’s preferences for care they would like to receive at a time when they may no longer be able to make such decisions or their wishes known).

A written tool with eight questions for structuring ACP discussion. Questions concern need of information, wishes and needs for future support and care, needs and wishes regarding religion, culture, diet, involvement of family and friends in care provision, place of living when independent living is no longer possible, and additional needs.

People with early-stage dementia.

Written tool

Frequency and duration can be adapted by the dyads needs.

For the study, two in-home sessions were organized.

No trainer

Quinn et al. (2016) [18]

Self-management program (SMART study)

To help people with dementia to practically manage their memory difficulties and to find ways of dealing with changes in their lifestyle.

Group sessions included providing information, enhancing self-efficacy, and encouraging vicarious learning. The facilitators provide information about dementia. To enhance group members’ sense of self-efficacy, the program encouraged group members to develop skills in problem-solving, goal-setting, and mindfulness-based relaxation. Additionally, the facilitators encouraged group members to share ideas, strategies, and achievements and so learn from each other. The first and last sessions were for both the person with dementia and the family carer; the other sessions were only for the person with dementia.

People with early-stage dementia and family carers.

Group sessions

Eight weekly 90-min group sessions.

Sessions were run by a staff nurse and a support worker.

Song et al. (2019) [19]

SPIRIT - Sharing Patient’s Illness Representations to Increase Trust

To promote preparation for end-of-life decisions in people with dementia and their surrogates.

SPIRIT was adapted to be suitable for people with dementia. The original SPIRIT is a structured psychoeducational intervention provided during a face-to-face interview. The intervention has six steps: 1) assessing illness representation, 2) identifying gaps and concerns, 3) creating conditions for conceptual change, 4) introducing replacement information, 5) summarizing, and 6) setting goals and planning. A Goals-of-Care tool is completed at the end of the session to indicate the patient’s preferences.

The exact content of the modified version was not described.

Dyads of people with (mild to moderate) dementia and their surrogates.

Individual dyad sessions

One session (duration is not described in the original article).

The session was conducted by an trained social worker.

Stockwell-Smith et al (2018) [16]

The Early Diagnosis Dyadic Intervention (EDDI)

To assist people with dementia and their family carer to identify challenges they may experience during the dementia trajectory and to empower them to develop strategies and support structures to manage these challenges.

Modified version of the USA EDDI. Dyad members worked together and individually with a facilitator to 1) identify their current care values, 2) their future care needs and preferences, 3) discuss preferences for care providers, and 4) consider suitable care settings.

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

Individual dyad sessions.

Seven weekly session. Each session lasting between 60 and 90 min.

Community practitioners recruited from two Queensland-based not-for-profit community service providers.

Whitlatch et al. (2006) [15]

The Early Diagnosis Dyadic Intervention (EDDI)

To help people with dementia and informal carers to express their preferences and concerns about the care situation and to strengthen the relationship bond.

During the individual sessions the tools used were a magnetic board, care values ladder worksheet, care preferences worksheet, barriers and solutions worksheet and care plan worksheet. The program’s objectives were (a) to increase the understanding of care preferences and values of each dyad member; (b) to discuss and practice effective communication techniques; (c) to discuss discrepancies in care preferences and expectations; (d) to increase the dyad’s knowledge about available services; and (e) to explore the emotional significance and relationship issues brought on by the illness for both care partners.

People with early-stage dementia and their informal caregivers

Individual dyad in-home sessions.

Nine structured individual 60–90 min in-home sessions. Five joint and four separate sessions delivered weekly or biweekly over an average period of 3 months (range 1.5 to 7.2 months).

Trained counselors.