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

Abstract

This review identified, critically appraised, and synthesized 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 wellbeing of people with progressive memory disorders. While an array of intervention effects has 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 of non-pharmacological interventions. Methods:The search strategy used a three-step approach and sought to locate both published and unpublished studies.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 MedNar was used to search for unpublished studies.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 ¼ 31), mixed methods (n ¼ 8), grounded theory (n ¼ 5), and ethnography (n ¼ 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 selfesteem and positive alterations to their daily life. To achieve the desired benefits, intervention development should embody communication based on equality and respect for those who suffer from 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.

‘Experiences of patients and their informal caregivers with cognitive stimulation programs for dementia: A qualitative systematic review protocol’

“…A preliminary search for existing systematic reviews on this topic was conducted on PROSPERO, JBI Evidence Synthesis, the Cochrane Database of Systematic Reviews and PubMed. Two similar qualitative systematic reviews were identified: those of Gibbor et al [20] and Tuomikoski et al [21]. The scope of Tuomikoski et al's review, which examined the experiences of people with progressive memory disorders who have participated in non-pharmacological interventions, was broader than the proposed review since it evaluated cognitive stimulation alongside other non-pharmacological interventions, such as exercise programs and music therapy [21].…”

“…Two similar qualitative systematic reviews were identified: those of Gibbor et al [20] and Tuomikoski et al [21]. The scope of Tuomikoski et al's review, which examined the experiences of people with progressive memory disorders who have participated in non-pharmacological interventions, was broader than the proposed review since it evaluated cognitive stimulation alongside other non-pharmacological interventions, such as exercise programs and music therapy [21]. Gibbor et al, on the other hand, focused their review on a specific type of cognitive stimulation intervention: CST and its variations, excluding other forms of cognitive stimulation interventions [20].…”