Verification of Educational Support Intervention for Family Caregivers of Persons with Dementia.

Abstract

To the Editor: Since 2012, the authors have provided an educational support program for persons with early-stage dementia and their family caregivers. It has been determined that information about the diagnosis and treatment of dementia is important for persons with early-stage dementia and their caregivers.1 As the condition of the person with dementia worsens, behavioral and psychological symptoms of dementia and increasing problems with activities of daily living (ADLs) can create greater care burdens for caregivers.2 Dementia-related stigma3 and confusion and anxiety about the unknown can exacerbate caregivers’ burdens, so it was felt that caregivers needed coping strategies in addition to skills for managing dementia symptoms and ADL disorders. The aim of this research was to verify the effects of a trial program of educational support intervention for caregivers of persons with progressive dementia. Ten caregivers (of nine persons with dementia) who had participated in a 6-month trial program (June 2013–December 2013) at the National Center for Geriatrics and Gerontology (NCGG, Aichi, Japan) were studied. The program covered four domains (medicine, dementia care, psychology, welfare) in 12 classroom-style lectures (Table 1). The lectures on dementia care, psychology, and welfare incorporated group work and discussions. The effect of the educational support intervention was evaluated before and after each lecture by assessing changes in Temporary Mood Scale scores,4 which measures negative emotions (depression, anger, fatigue, tension, and confusion) and positive emotions (vitality). These data were extracted from self-administered surveys and electronic medical records. Approval for the study was obtained from the ethics committee of the NCGG. Six of the caregivers were female, and six were in their 70s. Six subjects lived with a third party in addition to the person with dementia. Five were the spouses of the persons with dementia. The mean number of caregiving years was 3.4 ± 1.5, and the average age of the persons with dementia was 72.9 ± 6.8. The causes of dementia were Alzheimer's disease (n = 5), dementia with Lewy bodies (n = 2), and vascular dementia (n = 2); the mean Mini-Mental State Examination5 score was 18.0 ± 3.5. The mean time since the initial diagnosis of dementia was 6.5 ± 9.6 years. During the 6-month program, the Japanese version of the Zarit Caregiver Burden Interview (ZBI)6 score changed from 29.4 ± 11.4 to 32.0 ± 6.6, whereas the Dementia Behavior Disturbance Scale7 score changed from 25.5 ± 2.9 to 28.0 ± 10.0. The six Temporary Mood Scale scores (negative emotions of depression, anger, fatigue, tension, and confusion; positive emotion of vitality) changed after each lecture (medicine, dementia care, psychology, welfare). Decreased negative emotions and increased positive emotions were observed after the lectures about nonpharmacotherapy for dementia (medical domain), person-centered care and skills for managing persons with dementia (dementia care domain), skills of listening to persons with dementia (psychology domain), creation of care mapping, and methods of using social support (welfare domain). Of these, significant differences were confirmed for person-centered care, communication skills, listening skills, care mapping, and using social support. Although caregivers’ burden increased over the 6-month period, the program clearly decreased negative emotions and increased positive emotions related to caregiving. Lectures including group work facilitated information exchange and expression of opinions about dementia care. This natural sharing of similar experiences created social and psychological support among the caregivers. These results also demonstrated the limitations of the ZBI to fully evaluate the outcomes of support interventions. Past studies have used ZBI scores before and after an intervention to measure outcomes, but the current results suggest that these outcomes should be based on stress theory, including psychological status (e.g., depression, burnout), and acquisition of caregiving coping skills as mediating factors for psychological status. These results suggest that educational support for caregivers of persons with currently progressing dementia should teach expert knowledge and specific skills for dementia care, including methods of communication and, at the same time, provide opportunities for interactions between caregivers. There is a plan to redesign the program based on these results and to implement scientific validation of this educational intervention with randomized controlled trials. Funded by the National Center for Geriatrics and Gerontology's research and development fund (24–24). Conflict of Interest: There are no conflicts of interest to declare. Author Contributions: Seike, Sakurai, Sumigaki, Toba: study concept and design. Seike, Sakurai, Sumigaki, Takeda, Endo, Toba: acquisition of subjects and data. Seike, Sakurai: data analysis. Seike, Sakurai, Sumigaki, Takeda, Toba: data interpretation. Seike, Sakurai, Takeda: manuscript preparation. Sponsor's Role: Not applicable.