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

Hajime Takechi (), Naoko Hara, Kyoko Eguchi, Shoko Inomata, Yuki Okura, Miwa Shibuya, Hiroshi Yoshino, Noriyuki Ogawa and Morio Suzuki
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Hajime Takechi: Department of Geriatrics and Cognitive Disorders, School of Medicine, Fujita Health University, Toyoake 470-1192, Aichi, Japan
Naoko Hara: Department of Gerontological Nursing, Niigata College of Nursing, 240 Shinnan-cho, Joetsu 943-0147, Niigata, Japan
Kyoko Eguchi: Faculty of Nursing, Shumei University, 1-1 Daigaku-cho, Yachiyo City 270-0003, Chiba, Japan
Shoko Inomata: Department of Nursing, Akita University Hospital, 44-2 Hasunuma Hiroomote, Akita-shi 010-8543, Akita, Japan
Yuki Okura: Department of Gerontological Nursing, Niigata College of Nursing, 240 Shinnan-cho, Joetsu 943-0147, Niigata, Japan
Miwa Shibuya: School of Cultural and Social Studies, The Graduate University for Advanced Studies, Osaka 565-8511, Osaka, Japan
Hiroshi Yoshino: Department of Geriatrics and Cognitive Disorders, School of Medicine, Fujita Health University, Toyoake 470-1192, Aichi, Japan
Noriyuki Ogawa: Department of Occupational Therapy, Faculty of Health Sciences, Kyoto Tachibana University, 34 Oyakeyamada-cho, Yamashina-ku, Kyoto City 607-8175, Kyoto, Japan
Morio Suzuki: Alzheimer’s Association Japan, 811-3 Seimei-cho, Kamigyoku, Kyoto City 602-8222, Kyoto, Japan

IJERPH, 2023, vol. 20, issue 6, 1-13

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 (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
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