Table 3 Study Outcomes

 Hilgeman et al. (2014) [17]

Intervention group individuals reported less overall conflict or discomfort with advanced care planning at post-treatment than the comparison group.

Intervention group individuals reported feeling more supported in their decisions and feeling less distressed about incomplete information regarding decision-making. The uncertainty subscale and the values clarity subscale were not different between groups at post-treatment.

The intervention group reported less depressive symptoms, increased quality of life (BASQID), and better self-rated dependence in mobility at post-treatment compared to the comparison group.

No differences were found regarding self-reported anxiety, meaning, social engagement, emotional anticipated support, self-care and quality of life measured by the QOL-AD, pain, and discomfort.

Family contacts rated the intervention individuals as less depressed and as having higher quality of life (measured by the QOL-AD) than the comparison group.

Family contact ratings of health-related indicators of well-being revealed differences on the EQ-5D domains of self-care, usual activities and anxiety/depression. Mobility, pain, discomfort and health status on a visual analog scale did not differ between groups.

Data on feasibility and acceptability indicated satisfactory acceptability, treatment implementation and feasibility among staff, people with dementia and family contacts.

The PIPAC intervention led to better outcomes than the comparison intervention across self- and proxy-reported measures for depression, QoL and health related indicators of well-being or illness burden.

 Quinn et al. (2016) [18]

People with dementia stated that the intervention enabled them to express their point of view and that it enabled two-way conversations and discussion with informal carers.

Higher scores for QoL in the intervention group than in the control group; higher anxiety scores in intervention group than in the control group; lower depression scores in intervention group than in the control group; lower health-related QoL in the intervention group at three months, higher health-related QoL at six months in the intervention group.

People with dementia found the program enjoyable (75%) and helpful (92%) and would recommend it to others (75%). Most people wanted the program to last longer, and some participants would have preferred less heterogeneous participant groups. In terms of intervention acceptability, attrition was minimal, adherence was good, and satisfaction ratings were high.

This study has provided preliminary evidence that self-management may be beneficial for people with early-stage dementia. The program fostered independence and reciprocity, promoted social support, and provided information and help.

 Song et al. (2019) [19]

Preparedness outcomes did not changes between baseline and post-intervention in both treatment groups. Dyad congruence was high, patient decisional conflict was low, and surrogate decision-making confidence was high.

The most frequently stated benefit of SPIRIT was helping the person with dementia and the surrogate being on the same page.

Feasibility of SPIRIT: All 23 people with dementia were able to articulate their values and end of-life wishes. Nine people could not recall participating in SPIRIT at post-intervention. Several participant experienced some difficulty in choosing a response option in the Decisional Conflict Scale.

Overall people with dementia stated that they felt comfortable during the session and that it felt good to express feelings and preferences. Surrogates appreciated the opportunity for themselves and PWDs to express their feelings and have open communication about dementia and end of life.

Emotional difficulties were also reported. A few people with dementia found it hard to be confronted with death. For surrogates the most challenging part was the emotional difficulty visualizing the person with dementia’s end of life.

The adapted SPIRIT intervention enabled people with dementia in the study to engage in an advanced care planning (ACP) discussion and promoted authenticity of exchanges about experiences surrounding illness and values. Meaningful ACP conversations were possible even for those with moderate dementia and limited decision-making capacity.

 Stockwell-Smith et al (2018) [16]

No significant between-group differences were found in Symptom Management or Support Service self-efficacy.

Service uptake: Significant differences between groups in their use of education, training, and/or information services (at baseline and post intervention) and support group services (at 4 months follow-up).

Most intervention dyads considered they were better informed about available support networks due to participation, “Gave us a broader appreciation of what’s involved and how we can use it”. And helped them prepare for changing needs: “The sessions helped us to decide to stay in our present house with modifications rather than move closer to family”.

Not addressed

Not addressed

The Self-Efficacy Questionnaire responses did not show a significant difference between the intervention and control groups over time. However, small but consistent improvements were found in the intervention group dyads’ uptake and awareness of community support and their use of education and information services and support group services. Improvements in self-efficacy were evident in the postintervention evaluation qualitative responses where dyads expressed greater confidence in identifying and accessing community support and expressed an increased awareness of their partner’s preferences regarding external care.

 Orsulic-Jeras et al. (2016) [20]

People with dementia felt more in control of the care situation (88%), felt better prepared for what lies ahead (94%) and were more confident making care decisions (90%). Furthermore, 94% of the people with dementia felt that the SHARE program gave them an opportunity to express their thoughts and feelings.

Not addressed

80% of the caregivers and 65% of the people with dementia considered the number of sessions just right or would have liked more. Length of sessions was acceptable.

Planning in the early stages when people with dementia can voice their care values and preferences for future care is important.

 Murphy & Oliver (2013) [21]

All participants felt significantly more involved in, and satisfied with discussions when they used Talking Mats. People mentioned that they were more aware of what they could still do and what they enjoyed doing, rather than just focusing on what they could no longer do.

Not addressed

Not addressed

People with dementia and family carers can use Talking Mats to feel more involved in making decisions about managing daily living. Talking Mats could result in increased well-being and positive adjustment to accepting care in people with dementia. The relationship between the person with dementia and the informal caregiver could be improved.

 Poppe et al. (2013) [22]

People with dementia were relieved and felt less worried and more secure after discussing their preferences for the future. Some people found the discussion dispiriting and difficult without knowing what the future would bring.

Not addressed

Patients, staff, and carers agreed that all relevant issues were covered in the ACP-ED tool. Most carers and patients would recommend the tool. The relationship between patient and carer should be good and the diagnosis should be accepted before starting using the tool. Timing of the intervention is therefore dependent on the individual situation, but rather sooner than later.

The evaluation suggests that the ACP-ED tool can, with training, enable advanced care planning in people with mild dementia following diagnosis. This supports the implementation of advanced care planning in memory services and community mental health teams.

 Boyd (2007) [9]

People in the early stages of dementia, particularly those with strong values, were able to articulate their values. Exploring other topics, such as reminiscing about family, friends and life situations, made their values apparent.

Not addressed

Half the participants did not have strong values and were happy to leave decisions for family members. Some of the participants felt threatened when discussing their diagnosis and future. The other half of the participants were happy to talk about and record their values. Some participants needed prompts from the interviewer or informal caregiver to articulate their values.

The study showed that the vast majority of professionals would refer to the documents and find them useful. The majority would attempt to maintain past wishes and values, although not if it caused agitation or distress to the person. Many professionals stated that ‘time’ would be the main barrier for using the tool.

The study showed that the VHF can be an effective way of empowering people with dementia.

 Martin et al. (2015) [23]

The task of setting goals was seen as something that focused thoughts on the future and planning to do something positive. There was a positive impact on self-esteem.

There is preliminary evidence that the intervention improves quality of life, psychological well-being, and coping with changes in memory.

The data supports the feasibility of the intervention: The goal setting activity was positively received by participants, participants were able to attend the sessions, complete activities and reported enjoyment and benefits from this. The program’s flexible nature, focus on strengths and the opportunity to spend time with other people living with dementia were particularly well received.

The results highlight the usefulness and acceptability of self-management for people with early-stage dementia and provide initial support for the program’s structure and content.

 Whitlatch et al. (2006) [15]

Not addressed

Not addressed

Dyads on average attended 6.93/9 sessions and rated the sessions as highly acceptable and the enthusiasm and effectiveness of the counsellor as high. Counsellors were slightly less positive, but scores indicate that the counsellors believed that session goals and acceptability of the intervention were consistently achieved throughout the sessions. Some of the tools turned out to be challenging and should be simplified.

Participant and counsellor evaluations of the EDDI protocol indicated that the intervention was acceptable and satisfactory to the caregivers, care receivers and counsellors. Moreover, the intervention’s goals and objectives were achievable.