Family caregivers' better nutritional status is associated with care recipients' better nutritional status.

BACKGROUND AND AIMS: A high proportion of older care recipients (CRs) face malnutrition and risk of malnutrition, affecting their functional abilities and posing challenges for caregiving. The aim of this study was to assess the risk for malnutrition among older CRs and the associated characteristics of both CRs and family caregivers (FCs) with nutritional status of CRs. METHODS: A cross-sectional study consisted of 120 CRs (≥65 years) and their 118 FCs (≥60 years). Nutritional status was assessed with the Mini Nutritional Assessment (MNA). RESULTS: The majority (63%) of the CRs had a risk of malnutrition (MNA score 17-23.5), and 7% had malnutrition (MNA score <17). The CRs had significantly lower MNA scores compared to their FCs (p < 0.001). The multivariate linear regression analysis showed that CRs' higher number of comorbidities (B = -0.37, p = 0.013) and higher P-hs-CRP (B = -0.10, p = 0.047) were associated with their decreased MNA scores. There was a positive association between CRs' hand grip strength (B = 0.11, p = 0.004) and FCs' MNA scores (B = 0.41, p = 0.004) with MNA scores of the CRs. CONCLUSION: Malnutrition and risk of malnutrition are common concerns in older CRs, especially those with a higher number of comorbidities and low-grade inflammation. Regular assessment of the nutritional status of both older CRs and FCs is justified, as FCs' better nutritional status is associated with better nutritional status of CR. CLINICAL TRIAL REGISTRATION NUMBER: ClinicalTrials.gov NCT04003493.

Use of oral health care services by family caregivers and care recipients: the LENTO intervention.

OBJECTIVE: We aimed to evaluate the impact of an individually tailored preventive oral health intervention on the use of oral health care services by older family caregivers (FCs) and their care recipients (CRs). MATERIAL AND METHODS: A randomized controlled six and 12-month oral health intervention study included FCs and CRs aged ≥65 years living in Eastern Finland. The participants were randomly assigned to an intervention (FCs n = 53, CRs n = 47) and a control (FCs n = 39, CRs n = 35) group. Individually tailored oral health interventions for the FCs provided by a dental hygienist focused on oral hygiene and self-care. Generalized estimating equations were used to analyze the impact of intervention on the change in the use of oral health care services. RESULTS: The intervention had no significant effect on the use of oral health care services by the FCs or their CRs. Traditional factors such as female gender, a higher number of teeth, toothache, no dental fear, and higher morbidity were significantly (p < 0.05) associated with an increased use of oral health care services in the FCs, but not among the CRs. CONCLUSIONS: Individually tailored preventive oral health intervention showed no effect on the use of oral health care services. To promote oral health among the elderly, specific interventions focusing on use of oral health care services are needed. TRIAL REGISTRATION: clinicaltrials.gov/study/NCT04003493.

Managers' perceptions of the factors affecting resident and patient safety work in residential settings and nursing homes: A qualitative systematic review.

Identifying ways to ensure resident safety is increasingly becoming a priority in residential settings and nursing homes. The aim of this qualitative systematic review was to identify, describe, and assess research evidence on managers' perceptions regarding the barriers and facilitators of daily resident and patient safety work in residential settings and nursing homes. A qualitative systematic review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis checklist. Published studies were sought through academic databases: Academic Search Premier, CINAHL, PubMed (MEDLINE), Scopus, SocINDEX, and Web of Science Core Collection in April 2023. Finally, 12 studies were included. The results of the included studies were synthesized using thematic synthesis after data extraction. According to the results, (1) competent staff and material resources; (2) management and culture; (3) communication, networks, optimal use of expertise; and (4) effective use of guidelines, rules, and regulations play a significant role in the success of resident and patient safety work. The findings revealed that promoting resident safety should not be seen solely as the responsibility of individual residential or nursing home personnel, as it requires multiprofessional cooperation and access to wider networks. Staff and managers must be receptive to learning, changing, and improving safety. Moreover, to ensure resident safety, it is essential to ensure that the organizations support safety work in residential and nursing home units.

Prevalence and risk factors of frailty among older family caregivers.

AIM: The aim of this study was to investigate the prevalence of frailty and identify the demographical and clinical factors associated with frailty among older family caregivers. METHOD: The participants of this cross-sectional study were older family caregivers (n = 125) living in Eastern Finland. Data on functional and cognitive status, depressive symptoms, nutritional status, medication, chronic diseases, stroke, and oral health were obtained. The Mini Nutritional Assessment (MNA) was used to evaluate nutritional status. Frailty status was evaluated using the abbreviated comprehensive geriatric assessment (aCGA) scale. RESULTS: Seventy-three percent of caregivers were identified as frail. According to multivariable logistic regression, cataract, glaucoma, or macular degeneration and the MNA score were predictors of frailty. After adjusting for age, gender, and number of own teeth, the MNA score remained a significant predictor of frailty (adjusted OR = 1.22, 95% CI = 1.06, 1.41). As the MNA scores decreased (meaning poorer nutritional status), the risk of frailty increased. CONCLUSIONS: The present study showed that frailty is prevalent among older family caregivers. Recognising older family caregivers with frailty or at risk of frailty is vital. It is essential to acknowledge vision problems' role in frailty and to monitor and support the nutritional status of family caregivers regularly to prevent frailty development.

Empowering Support for Family Members of Brain Injury Patients in the Acute Phase of Hospital Care: A Mixed-Methods Systematic Review.

This review aimed to identify and synthesize empowering support for the family members of patients in the acute phase of traumatic brain injury hospital treatment. CINAHL, PubMed, Scopus, and Medic databases were searched from 2010 to 2021. Twenty studies met the inclusion criteria. Each article was critically appraised using the Joanna Briggs Institute Critical Appraisals Tools. Following a thematic analysis, four main themes were identified about the process of empowering traumatic brain injury patients' family members in the acute phases of hospital care: (a) needs-based informational, (b) participatory, (c) competent and interprofessional, and (d) community support. This review of findings may be utilized in future studies focusing on designing, implementing, and evaluating an empowerment support model for the traumatic brain injury patient's family members in the acute care hospitalization to strengthen the current knowledge and develop nursing practices.

Flow of information contributing to medication incidents in home care-An analysis considering incident reporters' perspectives.

AIM: To describe the contributing factors and types of reported medication incidents in home care related to the flow of information in different phases of the medication process, as reported by multi-professional healthcare groups. DESIGN: This descriptive, qualitative study used retrospective data. METHODS: An incident-reporting database was used to collect 14,289 incident reports from 2017 to 2019 in a city in Finland. We used this data to select medication incidents (n = 1027) related to the flow of information in home care and between home care and hospitals. Data were divided into five groups based on the medication phase: (1) prescribing, (2) dispensing, (3) administration, (4) documentation and (5) self-administration. In addition, the types of medication-related incidents were described. The data were examined using abductive content analysis. The EQUATOR SRQR checklist was used in this report. RESULTS: Four main categories were identified from the data: (1) issues related to information management, (2) cooperation issues between different actors, (3) work environment and lack of resources and (4) factors related to healthcare workers. Cooperation issues contributed to medication-related incidents during each phase. Incomplete communication was a contributing factor to medication incidents. This occurred between home care, remote care, hospital, the client and the client's relatives. Specifically, a lack of information-sharing occurred in repatriation situations, where care transitioned between different healthcare professionals. CONCLUSION: Healthcare professionals, organisations, clients and their relatives should focus on the efficient and safe acquisition of medications. Specifically, the use of electronic communication systems, together with oral reports and checklists for discharge situations, and timely cooperation with pharmacists should be developed to manage information flows. RELEVANCE TO CLINICAL PRACTICE: These findings demonstrate that healthcare professionals require uniform models and strategies to accurately and safely prescribe, dispense and administer medications in home care settings. No patient or public contributions.

Assessing Social Inequalities in Older Family Caregivers' Frailty Conditions, Comorbidity, and Cognitive Functioning: A Cross-sectional Study.

We aimed to assess the social inequalities in older family caregivers' frailty conditions, comorbidity, and cognitive functioning. A cross-sectional study was conducted. Study participants were recruited in 2019 in Finland. First, cognitive functioning was assessed with a Mini-Mental State Examination, comorbidity with the modified Functional Comorbidity Index, and frailty conditions were evaluated using the abbreviated Comprehensive Geriatric Assessment. Study participants were also interviewed on socioeconomic factors. The social inequalities in these health outcomes were assessed using the Independent Samples t-test, Pearson Chi-square test, and Binary Logistic Regression Analysis. Family caregivers' (n = 125) mean age was 74, and 73% had frailty conditions. Family caregivers' social inequalities in frailty conditions were linked to their older age and the lowest caregiving cash benefit. Family caregivers' low educational attainment was also the main factor predicting their minor cognitive impairment. Family caregivers' social determinants of health should be fully assessed in their health assessment, policies, and programs to ensure healthy aging for both family caregivers and care recipients in the future.

The Impact of the COVID-19 Pandemic on the Psychological Well-Being of Caregivers of People with Dementia or Mild Cognitive Impairment: A Systematic Review and Meta-Analysis.

The aim of this systematic review was to investigate the effects of the COVID-19 lockdown on the psychological well-being of caregivers of people with dementia or mild cognitive impairment (PwD/MCI). Electronic databases were searched from inception to August 2022 for observational studies investigating the COVID-19 lockdown and psychological well-being of caregivers of PwD/MCI. Summary estimates of standardized mean differences (SMD) in psychological well-being scores pre- versus during COVID-19 were calculated using a random-effects model. Fifteen studies including 1702 caregivers (65.7% female, mean age 60.40 ± 12.9 years) with PwD/MCI were evaluated. Five studies found no change in psychological well-being parameters, including depression, anxiety, distress, caregiver burden, and quality of life. Ten studies found a worsening in at least one parameter: depression (six studies, n = 1368; SMD = 0.40; 95%CI: 0.09-0.71; p = 0.01, I2 = 86.8%), anxiety (seven studies, n = 1569; SMD = 1.35; 95%CI: 0.05-2.65; I2 = 99.2%), caregiver distress (six studies, n = 1320, SMD = 3.190; 95%CI: 1.42-4.95; p < 0.0001; I2 = 99.4%), and caregiver burden (four studies, n = 852, SMD = 0.34; 95%CI: 0.13-0.56; p = 0.001; I2 = 54.1%) (p < 0.05). There was an increase in depression, anxiety, caregiver burden, and distress in caregivers of PwD/MCI during the lockdown in the COVID pandemic. This could have longer term consequences, and it is essential that caregivers' psychological well-being is assessed and supported, to benefit both themselves and those for whom they care.

Depressive symptoms, low-grade inflammation, and poor oral health prevents the success of nutritional guidance in older caregivers.

PURPOSE: The present study aimed to determine which factors prevents the success of nutritional interventions for older family caregivers (FCs), in the form of individually tailored nutritional guidance. METHODS: The present study focuses on the intervention group of FCs (n = 63) of a randomized controlled trial. Older FCs (≥60 years of age) receiving a care allowance for a home-living care recipient (≥65 years of age) were included in the present study, which focused on nutritional interventions via individually tailored nutritional guidance provided by a clinical nutritionist. The associations between changes in protein intake (3-day food record), Mini Nutritional Assessment (MNA) scores, and plasma albumin and prealbumin concentrations, as well as associated factors, for the 6-month intervention period were analyzed using generalized estimating equations. RESULTS: Intervention time, female sex, older age, higher net income, better hand grip strength, more teeth, and removable denture use were positively associated with an increase in protein intake. Fewer depressive symptoms were associated with a positive change in the MNA scores. Younger age, lower education level, lower body mass index (BMI), higher depressive symptoms, and fewer teeth were associated with an increase in plasma albumin concentration. Younger age, lower education, lower plasma concentration of high-sensitivity C-reactive protein at 6 months, lower Sense of Coherence (SOC) -13 score, fewer teeth, and absence of removable dentures were associated with an increase in plasma prealbumin concentration. CONCLUSION: Older female FCs with a higher income, better hand grip strength, lower education, and lower SOC benefited most from individually tailored nutritional guidance. Depressive symptoms, oral health, and low-grade inflammation should be considered when providing nutritional guidance to older FCs. CLINICAL TRIAL REGISTRATION NUMBER: ClinicalTrials.gov NCT04003493 (July 1, 2019).

Older family caregivers' diet-related disparities: Cross-sectional evidence from Finland.

BACKGROUND: Some older family caregivers experience financial vulnerabilities due to their caregiving role, which may affect their ability to afford appropriate food. This study aimed to assess the extent to which there are diet-related disparities among older family caregivers in Eastern Finland. METHODS: This study is based on the multidisciplinary LifEstyle, NutriTion and Oral health in caregivers (LENTO) study. In total, 125 family caregivers were included. Data were collected between June and December 2019. Participants were assessed on health, nutritional status and sociodemographic factors. The associations and predictors of diet-related disparities were assessed using the independent samples t-test, ANOVA-test, χ2 -tests and binary logistic regression. RESULTS: The mean age of family caregivers was 74 years (SD = 8). Most were female (72%), 20% had malnutrition risk and 30% reported having 'moderately enough money' or less, which was identified as 'subjective poverty'. Family caregivers experiencing subjective poverty were less likely to consume two or more portions of fruit and vegetables daily and were more likely overweight. Study participants' diet-related disparities were further associated with several health inequalities, including comorbidity, depression, diabetes (Type I or II) and osteoporosis. CONCLUSIONS: Older family caregivers have diet-related disparities, further associated with health inequalities. Family caregivers' diet-related disparities require increasing attention in healthcare. Addressing family caregivers' food insecurity risk would enhance their health equity. Lack of assessment of diet-related disparities will only deepen health inequalities.

Lack of freedom predicted poor self-reported health among family caregivers of children with disabilities during the COVID-19 pandemic in Europe.

AIM: We aim to assess the effects of the COVID-19 pandemic on self-reported health and quality of life among family caregivers of children with disabilities across Europe. DESIGN: Cross-sectional study. METHODS: Data from the survey by the Eurocarers and IRCCS-INRCA were used. The data were collected between November 2020 and March 2021 from 16 European countries. Data analysis was done using regression analysis to identify family caregivers' self-reported health and well-being predictors. RESULTS: This study included 289 caregivers. The mean age of children was 12 years. Their family caregiver's mean age was 44, and they were mainly women. Experience of lack of freedom predicted family caregivers' poor self-reported health and quality of life. Children's interrupted health and social services also predicted family caregivers' poor self-reported mental well-being. Longitudinal evidence on the pandemic's effects and a diverse view of family caregivers of children with disabilities are needed to plan effective post-pandemic health services and nursing practice. No Patient or Public Contribution.

Extending ageing nurses' working lives: A mixed-methods systematic review.

AIM(S): To identify, describe and assess research evidence on factors that promote working until and beyond the official retirement age among nurses. DESIGN: A mixed-methods systematic review. PROSPERO ID: CRD42022303890. DATA SOURCES: The CINAHL, PsycINFO, MEDLINE, Scopus, SocINDEX and Web of Science databases were searched in December 2021. REVIEW METHODS: The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) checklist was followed. Two researchers independently applied eligibility criteria, selected studies and conducted quality appraisals. Data-based convergent synthesis and thematic analysis were used. RESULTS: Eighteen studies were included, most of which were survey-based. Eleven studies were quantitative, six were qualitative and one used mixed methods. Our results reveal that willingness to continue in work increased with age. Six factors promoted working until and beyond the official retirement age among nurses: good health and work ability, the significance of work sufficient income, meaningful relationships and support in the working community, individually tailored work arrangements, and organizational support and recognition. CONCLUSION: To sustain experienced nurses in working life and promote their working beyond retirement age organizations urgently need to apply throughout working lives supporting age management schemes. Interventions should target supportive relations and individual and flexible arrangements at the workplace. Scarce studies investigated factors contributing to an extension of working life among nurses. Most published evidence on this topic is based primarily on nurses' subjective opinions and preferences: no intervention studies or objective evaluations of factors affecting retirement were found. IMPACT: The available evidence suggests the most critical factors for extending nurses' working lives are support and individual and flexible arrangements in the workplace. There is a need to test interventions and evaluate the effectiveness of measures encouraging nurses to extend their working lives. NO PATIENT OR PUBLIC CONTRIBUTION: Systematic review.

A participatory arts programme - Shared experience for family caregivers and care recipients.

AIM: This study aimed to describe family caregivers of older people's experiences of participatory art interventions, including music, dance and visual arts. DESIGN: A descriptive qualitative study. METHODS: Thematic interviews were conducted with 12 family caregivers. Qualitative data were analysed with thematic analysis. RESULTS: The results illustrated the meaning of art groups, which included a shared feeling of togetherness, empowering and activating peer support and a sense of communality. Art groups also represented a hobby, enhancing caregivers' social and mental well-being. The art groups could be described as an art-driven, participatory shared experience. Participatory arts are noteworthy contributors to the well-being of family caregivers and care recipients, especially from peer support and communality. Further research is needed to find out about participants' preferred art-based activities and their impact on their well-being. No patient or public contribution because of inflexibility in the timing of engagement.

Care workers' positive health during the COVID-19 pandemic: Psychometric properties of the Finnish version of the Salutogenic Health Indicator Scale and an 18-month follow-up.

BACKGROUND: There is a need to shift from biomedical and pathogenic approaches to salutogenic approach. OBJECTIVE: To validate the Finnish version of the SHIS by testing its psychometric properties in care workers and to assess the SHIS score over time. METHODS: We first conducted a survey in 2020 (T1) and tested the psychometric properties of SHIS among care workers. We repeated the survey in spring 2022 (T2) among the same subjects. We analyzed the changes in SHIS, self-rated health (SRH), work ability (WAS), sickness absence and occupational calling between T1 and T2. Thereafter, we compared changes between health care sectors' and the other sectors' care workers. RESULTS: The results showed an increase in positive health measured with the SHIS and the occupational calling, a decrease in the SRH, and an increase in the number of sickness-related absences among all the care workers between T1 and T2. There was no change in their WAS. The health care workers had a lower SHIS than the other sectors' care workers in both T1 and T2, but the increase in their SHIS was parallel to that of the other workers. CONCLUSION: SHIS is a useful and reliable measure of positive health and can be used in studies when determining subjective health instead of, or in addition to, diagnoses. It was able to detect the health changes caused by the COVID-19 pandemic. SHIS is capable of capturing the underlying salutogenic approach of health promotive resources.

Different Trajectories of Depressive Symptoms in Alzheimer's Disease Caregivers - 5-Year Follow-Up.

OBJECTIVES: The care of individuals with Alzheimer's disease (AD) relies on family caregivers (FCs) who face increasing demands. This study aimed to identify trajectories of depressive symptoms in FCs. METHODS: 226 FCs and individuals with AD were followed up for 5 years as a part of the ALSOVA study. Depressive symptoms in FCs were measured with the Beck Depression Inventory from the time of the AD diagnosis to the 5-year follow-up. We compared the trajectory of groups regarding age, education, and sex of both FC distress and AD symptoms. RESULTS: We identified three trajectories of FC depressive symptoms throughout follow-up: (1) declining (7.5% of FCs), (2) minor (59.7% of FCs), and (3) increased (32.7% of FCs). These groups exhibited differences in demographic variables, FC distress, and individuals with AD neuropsychiatric symptoms. CONCLUSIONS: The present study showed that FC depressive symptoms existed, and one-third of caregivers experienced increasing depressive symptoms over five years. CLINICAL IMPLICATIONS: Family caregivers' health should be followed in clinical practice, and those at risk of depression could be recognized early in caregiving.

Addressing the Experiences of Family Caregivers of Older Adults During the COVID-19 Pandemic in Finland.

This cross-sectional study assessed the experiences of family caregivers of older adults during the COVID-19 pandemic. Participants were recruited (n = 101) between April and December 2019. We applied a mixed-method approach. Quantitative data were analyzed using an independent samples t-test and logistic regression analysis, and qualitative experiences with modified thematic content analysis. The mean age of the family caregivers was 76 years (SD = 7), and 72% were females. Experiences of loneliness and worry during the pandemic were evaluated by self-assessment. Approximately one-third of the participants reported loneliness and worry. These experiences were further associated with female sex, increased psychological distress and depressive symptoms, and decreased physical condition and social relationships. Family caregivers were also worried about the pandemic's impact on health and well-being. Thus, the COVID-19 pandemic has added an extra psychosocial load to family caregivers. The post-pandemic era requires increased attention to re-evaluating policies and services.

Individually tailored nutritional guidance improved dietary intake of older family caregivers: a randomized controlled trial.

PURPOSE: Older family caregivers (FCs) are vulnerable to insufficient dietary intake and risk of malnutrition. The aim of this study was to assess the impact of individually tailored nutritional guidance on the dietary intake and nutritional status of older FCs and their care recipients' (CRs') nutritional status. METHODS: This study was a randomized controlled 6-month nutrition intervention in Eastern Finland. The inclusion criteria for FCs were having a home-living CR aged 65 or above and a valid care allowance. The exclusion criterion was CR receiving end-of-life care at baseline. Participants were randomly assigned to an intervention (FCs n = 63, CRs n = 59) and a control (FCs n = 50, CRs n = 48) group. Individually tailored nutritional guidance targeted to FCs was given to an intervention group by a clinical nutritionist. The main outcomes were dietary intake (3-day food record). RESULTS: After the 6-month intervention, 63 FCs and 59 CRs in the intervention group and 50 FCs and 48 CRs in the control group were analyzed. In the intervention group of FCs, the intakes of protein, riboflavin, calcium, potassium, phosphorus, and iodine differed significantly (p < 0.05) compared to the control group. In addition, the intake of vitamin D supplementation improved in the intervention group of the FCs and CRs (p < 0.001). CONCLUSION: Individually tailored nutrition guidance improves the intake levels of crucial nutrients, such as the intake levels of protein, vitamin D, and calcium of the FCs. Further studies are warranted to optimize the methods to improve the nutrition of FCs. Registration number of Clinical Trials: ClinicalTrials.gov NCT04003493 (1 July 2019).

Informal caregivers' perceptions of oral care and their association with the use of oral health services: A cross-sectional study among informal caregivers and their care recipients.

OBJECTIVE: This study aimed to describe informal caregivers' perceptions of the importance of oral care and investigate the association between these perceptions and the use of oral health services during the past year. BACKGROUND: There is limited research on informal caregivers' perceptions of oral care. These perceptions presumably influence oral self-care along with caregivers' and care recipients' use of oral health services. MATERIALS AND METHODS: Baseline data from the multidisciplinary Lifestyle, Nutrition, and Oral health in caregivers (LENTO) intervention study were analyzed. Informal caregivers (n = 125) and care recipients (n = 120) ≥$\ge $ 65 years of age and living in Eastern Finland participated in the study. Data were collected through semi-structured interviews. RESULTS: A majority (81%) of the informal caregivers considered oral care very important. Informal caregivers who considered oral care very important had 10 or more years of education, and considered service fees reasonable were more likely to have visited oral health services during the past year than other caregivers. No association between informal caregivers' perceptions of oral care and care recipients' use of oral health services during the past year was observed. CONCLUSIONS: The study provides insight into informal caregivers' perceptions of oral care, with most informal caregivers considering oral care to be very important. Our findings support what has been reported in previous studies in that favorable perceptions of oral care are associated with oral health service visits. This association, however, did not hold true for care recipients' use of services.

Pet ownership supports quality of life in home-dwelling people with Alzheimer's disease.

OBJECTIVES: Human-animal interactions have beneficial psychosocial and psychophysiological effects on individuals in both the presence and absence of medical health conditions. No previous prospective studies with long follow-up have investigated the effects of domestic pets on individuals with Alzheimer's disease (AD) who live at home. We examined the effects of pets on quality of life (QoL) and general well-being during a 5-year follow-up of home-dwelling persons with AD. METHODS: In a prospective study including 223 patients with very mild (Clinical Dementia Rating Scale [CDR] 0.5) or mild (CDR 1) AD at baseline who participated in the ALSOVA study, 40 (18%) had a pet. Self- and proxy-rated QoL in AD quality of life-AD (QoL-AD), 15D, and self-rated visual analogic scale (VAS) were assessed annually for 3 years and after 5 years. The Mini-Mental State Examination, Neuropsychiatric Inventory, and CDR sum of boxes (CDR sum of boxes) were measured at the same visits. RESULTS: A significant positive effect of pet ownership (p = 0.003, proxy-rated QoL-AD) on QoL was found over the entire follow-up. However, self-rated QoL-AD, 15D, and VAS did not significantly differ between pet owners and non-pet owners. CONCLUSIONS: The findings suggest that having a pet may support QoL in home-dwelling persons with AD. Self-rated or general QoL or well-being measurements are not an accurate method for studying QoL in individuals with dementia over time due to a lack of insight. Adding proxy-rated evaluations to this kind of study is recommended.

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.