Experiences of people with progressive memory disorders participating in non-pharmacological interventions: a qualitative systematic review.

Objective: The objective of this review was to identify, critically appraise, and synthesize the available evidence on the experiences of people with progressive memory disorders who are involved in non-pharmacological interventions.

Introduction: Non-pharmacological interventions are widely used to improve the quality of life and general well-being of people with progressive memory disorders. While many intervention effects have been studied, a systematic review of experiences is needed. First-hand knowledge and experience provides insight into noteworthy aspects of the use and timing of non-pharmacological interventions both in the community and institutionalized care.

Inclusion Criteria: The review included studies of people of all ages with progressive memory disorders who described their experiences participating in professionally delivered non-pharmacological interventions. Interventions delivered in all settings were eligible, with the aim of supporting the well-being of people with progressive memory disorders.

Methods: The search strategy used a three-step approach and sought to locate both published and unpublished studies. Key databases included MEDLINE (PubMed), CINAHL (EBSCO), Medic, Scopus (Elsevier), and PsycArticles (ProQuest). MedNar was used to search for unpublished studies. The databases were searched from the date of inception of the database to May 2020, and a mix of controlled vocabulary (ie, MeSH, CINAHL headings) and keywords were used to capture all existing qualitative studies related to the experiences of people of all ages with progressive memory disorders participating in non-pharmacological interventions. Only English, Swedish, and Finnish studies were included during the screening of the study titles and abstracts. The recommended JBI approach was used for study selection, critical appraisal, data extraction, and data synthesis.

Results: Forty-six studies were included in the review. The study designs included qualitative descriptions (n = 31), mixed methods (n = 8), grounded theory (n = 5), and ethnography (n = 2). The total number of participants was 444. The overall quality of the studies was rated as low or very low on the ConQual score, with dependability rated as low or moderate and credibility as moderate. Altogether, 189 findings were aggregated into eight categories and three synthesized findings. The synthesized findings describing the experiences of people with progressive memory disorders participating in a non-pharmacological intervention were as follows: i) it strengthened the sense of personhood; ii) it lightened up my life; and iii) what I find meaningful is that it was meant for us.

Conclusions: People with progressive memory disorders welcome non-pharmacological interventions. It is noteworthy that, regardless of what the interventions entailed, the participants experienced strengthened self-esteem and positive alterations to their daily life. To achieve the desired benefits, intervention development should embody communication based on equality and respect for those with memory disorders. However, the level of evidence of the review findings was evaluated as low or very low, which needs to be considered when applying the results in clinical practice.