Dynamics of Interaction among Professionals, Informal Supporters, and Family Caregivers of People with Dementia along the Dementia Care Pathway: A Nationwide Survey in Japan

Int J Environ Res Public Health. 2023 Mar 13;20(6):5044. doi: 10.3390/ijerph20065044.

Abstract

This study aims to clarify the dynamics of information provision and human interaction to satisfy the needs of family caregivers. A questionnaire survey consisting of items on information received at and after diagnosis, persons and resources consulted, needs, and caregiver-oriented outcomes was conducted. Among the respondents, 2295 individuals who were caring for people with dementia were divided into quartiles by the time after diagnosis, and differences were statistically analyzed. The time after diagnosis in the first to fourth quartiles was 0.73 ± 0.4, 2.52 ± 0.49, 4.89 ± 0.73, and 10.82 ± 3.7 years, respectively. The number of persons consulted by family caregivers increased significantly from the first to the fourth quartiles (p < 0.001). During this time, attributes of professionals and informal supporters changed depending on the quartile. As time progressed, acceptance of the diagnosis increased, but so did its impact on the lives of family caregivers. These findings revealed differences over time in what family caregivers wanted and the dynamics of interactions that filled their needs. Informal supporters accounted for a significant proportion of the total resources. However, many family caregivers thought the information and support were insufficient. Thus, continuous reform of the care pathway is needed.

Keywords: care pathway; dementia; family caregivers; national dementia strategy; support.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Caregivers*
  • Critical Pathways
  • Dementia* / diagnosis
  • Dementia* / therapy
  • Humans
  • Japan
  • Surveys and Questionnaires

Grants and funding

This study was funded by a grant for advancing health care for older people from the Ministry of Health, Labour and Welfare of Japan (No. 2021-94). The sponsor was not involved in the research or the preparation of the paper.