Table 3 Summary of reviews focused on needs of PLWD

Dooley, et al. (2015) Review UK

Review: observational studies of communication between patients, companions and healthcare professionals

Interventions

None.

Eight databases searched.

23 studies were identified observing: diagnostic, follow up, day centre, primary care and research consent interactions.

Companions were present in 14 studies

Findings: Three themes emerged: emotional impact of diagnosis, level of patient involvement and participant strategies to save face and cope with cognitive impairment. Varying patient involvement, showing marginalization in primary care but not in assessments or diagnostic feedback. Patients used humour and metaphor to compensate for difficulties retrieving information and responding appropriately, suggesting preserved awareness of the pragmatics of interaction. Companion roles fluctuated between patient advocate and professional informant. Professionals encountered challenges adapting to heterogeneous patient groups with varying capabilities and needs. Patient-companion professional communication in dementia care raises various ethical questions: Healthcare professionals need guidance in delivering a diagnosis and strategies to optimize patient and companion participation.

Street (2013) Essay/Opinion paper USA

Theoretical paper: clinician– patient communication contributes to a patient’s health and offers recommendations for future research.

No search strategy described.

Findings: communication measurement is complicated because relationships among communication behaviour, meaning, and evaluation are complex.

Conclusion: Researchers must do more to model pathways linking clinician–patient communication to the outcomes of interest, particularly pathways in which the communication effects are indirect or mediated through other variables. To better explicate how communication contributes to health outcomes, researchers must critically reflect on the assumptions they make about communication process and choose measures consistent with those assumptions.

Van Der Roest et al. (2007) Qualitative review The Netherlands

Narrative review on the subjective needs of people with dementia

Population

PLWD living in the community

Intervention: none.

Narrative review

34 studies

Findings: Few studies specifically aimed to measure the needs of people with dementia. Reported most frequently by people with dementia was the need to be accepted and respected as they are, the need to find adequate strategies to cope with disabilities, and the need to come to terms with their situation.

Overall, people with dementia do not frequently mention how they want their needs to be met.

Steeman et al. (2006) Belgium [43]

Narrative Review: qualitative studies on the management of daily life with dementia.

Intervention: None

28 qualitative studies

(reported in 33 articles)

Findings: Memory loss threatens perceptions of security, autonomy and being a meaningful member of society. Individuals use self-protecting and self-adjusting strategies to deal with perceived changes and threats. Thereby causing frustration, uncertainty and fear. Results support the integration of proactive care into the diagnostic process, to improve quality of life.

Care should actively involve both the individual with dementia and their family.

Barlow et al. (2002) [44]

Review: self-management approaches for people with chronic conditions

145 papers on chronic conditions

Findings: No studies of self-management found for dementia (most chronic conditions covered were asthma, diabetes, arthritis). Self-management approaches mostly group-based, individualised, or a combination of both. Group approaches were often supplemented with written materials and audiotapes. The format of self-management approaches varied and included booklets, lectures, role play and goal setting. Most approaches combined at least two formats of delivery (e.g. lectures and manual). Evidence from RCTs suggests that self-management approaches may be effective in increasing participants’ knowledge, symptom management, use of self-management behaviours, self-efficacy, and aspects of health status (e.g. depression). However, not all approaches target all of these outcomes. Multi-component programmes do not show improvements on all outcomes.