Communication-related experiences of individuals in the early phase of semantic dementia and their families: an interview study.

BACKGROUND: Semantic dementia (SD), a subtype of frontotemporal dementia, manifests as verbal symptoms, including social and behavioural deficits, associated with focal atrophy of the frontotemporal lobes. This study aimed to clarify the experiences of individuals with early-onset SD receiving speech and language rehabilitation (hereafter referred to as 'rehabilitation'), with the intent of making it routine, as well as the experiences of their families. METHODS: Individual interviews were conducted with nine families with members who had adopted rehabilitation. Verbatim transcripts were used as data, and analyzed inductively according to the content analysis process. RESULTS: The family members realised the changes in the personality and behaviour of the individual with SD early, to the extent that they thought the individual with SD was different from before and were distressed by the loss of verbal communication. Nevertheless, the family members found a way to communicate by maintaining residual functions through rehabilitation and utilising their unique relationship with the individual with SD. CONCLUSIONS: It is important to carefully explain the characteristics of the disease and the long-term significance of rehabilitation to individuals with SD and their families in the early stages of the disease.

Experiences of families of people living with frontotemporal dementia: a qualitative systematic review.

Frontotemporal dementia (FTD) is characterised by atrophy of the frontal and/or temporal lobes. People with FTD show language and emotional disturbances from onset, and communication problems usually affect people with FTD and their families even before diagnosis. These unique characteristics of FTD are not well understood and create substantial problems for people living with FTD and their families. This review explores the experiences of families of people living with FTD. Studies were selected and screened according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We searched four bibliographic databases for articles up to February 2021 to identify qualitative data on the experiences of families. The Critical Appraisal Skills Programme checklist for qualitative studies was used to assess all included studies. Of 235 identified articles, we included six studies in the qualitative synthesis. Meta-ethnography was conducted to interpret families' experiences of people living with FTD. The emergent concepts were synthesised into five themes: Something is wrong with my loved one; No one fully understands; Existential pain of caring for a loved one with FTD; Increased burden owing to specific FTD symptoms; and Forced to adapt to new and unique ways of living with a loved one with FTD. This review highlighted families' confusion and suffering (which began in the early stages of the disease, and sometimes before diagnosis) and the difficulty of communicating with people with FTD. These findings have implications for future practice, as they demonstrate the positive effect on family life of appropriate support that is provided early, rather than after the disease has progressed.

[The association between alcohol consumption and Mild Cognitive Impairment: the Toon Health Study].

AIM: The effects of alcohol consumption on Mild Cognitive Impairment (MCI) among the Japanese population had not been fully examined. Therefore, the objective of this study was to examine the association between alcohol consumption and MCI among the Japanese elderly population. METHODS: In total, 421 men and 700 women aged 60-84 years participated in this cross-sectional study. Alcohol consumption was estimated according to frequency and amount of major alcoholic beverages (i.e., beer, Japanese sake, shochu, and wine) consumed by each individual using a self-administered questionnaire. MCI was assessed using the Japanese version of the Montreal Cognitive Assessment. Multivariable odds ratio (OR) and 95% confidence intervals (CIs) of MCI according to alcohol consumption were calculated using logistic models. We further analyzed the associations of the major alcoholic beverages with MCI. RESULTS: The prevalence of MCI was 50.4% among the male participants and 31.4% among the females. A positive association between alcohol consumption and MCI was observed in men, but not in women. The multivariable OR (95% CI) of MCI for ≥ 2 go (46 g ethanol) /day vs. non-drinkers was 1.78 (0.93-3.40, p for trend = 0.045) in men and for ≥ 1 go (23 g ethanol) /day was 0.96 (0.39-2.38, p for trend = 0.92) in women, respectively. We also observed an association between shochu consumption and MCI in men, whereby the multivariable OR (95% CI) of MCI for each 1 go increment was 1.57 (1.18-2.07). CONCLUSION: Our findings suggest that alcohol consumption in moderation may contribute to the prevention of MCI development in men.

Empowering older people with early dementia and family caregivers: a participatory action research study.

BACKGROUND: The increase in the number of people suffering from dementia is of increasing global concern. A survey on the living conditions of the elderly in a Japanese rural community revealed a high prevalence of early dementia and the necessity for interventions not only for the elderly with early dementia but also for their families. OBJECTIVE: To describe the implementation and process evaluation of a programme based on cognitive rehabilitation aimed at empowering the elderly with early dementia and education and counselling programmes aimed at likewise empowering their family caregivers. DESIGN: This study used a community health action research model. Participatory action research (PAR) was conducted through a cycle of planning, action, and reflection to identify effective interventions to empower participants with dementia (PsWD) and their caregivers. SETTING: A rural town in Japan. PARTICIPANTS: This project involved 37 community-dwelling elderly with early or mild dementia and 31 family caregivers. METHODS: A focus group interview was used for assessment. A monthly activity-based programme based on cognitive rehabilitation was developed to improve cognitive function. Three types of data were collected: observational data collected during the activities, written comments from the caregivers, the record of phone interviews and counsellings with caregivers. These data were compiled in chronological order into a portfolio for analysis. To empower family caregivers, educational and counselling programmes were offered. RESULTS: The PAR lasted for 5 years and evolved over three cycles: individual, group and community. In the first cycle, the major focus of the intervention was to regain procedural skills for each PWD through a cooking programme. In the second cycle, to increase interactions with family members and with other PsWD, group activities that promoted communication among family members as well as among PsWD were implemented. The collective values and the beliefs of the PsWD's generation were validated by a series of trips to temples and shrines. In the third cycle, community participation was planned and implemented through culturally relevant sequential activities. PsWD demonstrated their expert skills and regained confidence. For family caregivers, the educational programme provided knowledge about dementia and utilization of social resources. Face-to-face and phone counsellings were offered as needed to coach problem-focused coping. These programmes helped to interpret the symptoms of dementia and to reduce the behavioural problems. CONCLUSIONS: Cognitive rehabilitation theory was useful to restore lost procedural skills and regain confidence for PsWD. This PAR illustrated the importance of interventions for both community dwelling elderly with early dementia and their family caregivers.