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

Author

Listed:
  • 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)

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.

Suggested Citation

  • Hajime Takechi & Naoko Hara & Kyoko Eguchi & Shoko Inomata & Yuki Okura & Miwa Shibuya & Hiroshi Yoshino & Noriyuki Ogawa & Morio Suzuki, 2023. "Dynamics of Interaction among Professionals, Informal Supporters, and Family Caregivers of People with Dementia along the Dementia Care Pathway: A Nationwide Survey in Japan," IJERPH, MDPI, vol. 20(6), pages 1-13, March.
    • Handle: RePEc:gam:jijerp:v:20:y:2023:i:6:p:5044-:d:1095552
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    References listed on IDEAS

    as
    1. Clarissa Giebel & Sarah Robertson & Audrey Beaulen & Sandra Zwakhalen & Dawn Allen & Hilde Verbeek, 2021. "“Nobody Seems to Know Where to Even Turn To”: Barriers in Accessing and Utilising Dementia Care Services in England and The Netherlands," IJERPH, MDPI, vol. 18(22), pages 1-16, November.
    2. Mitsuhiro Sado & Akira Ninomiya & Ryo Shikimoto & Baku Ikeda & Toshiaki Baba & Kimio Yoshimura & Masaru Mimura, 2018. "The estimated cost of dementia in Japan, the most aged society in the world," PLOS ONE, Public Library of Science, vol. 13(11), pages 1-13, November.
    3. Chia-Hui Chang & Yung Ming & Tsung-Hung Chang & Yea-Yin Yen & Shou-Jen Lan, 2020. "The Needs and Utilization of Long-Term Care Service Resources by Dementia Family Caregivers and the Affecting Factors," IJERPH, MDPI, vol. 17(16), pages 1-13, August.
    4. Tai Pong Lam & Kai Sing Sun & Hoi Yan Chan & Chak Sing Lau & Kwok Fai Lam & Robert Sanson-Fisher, 2019. "Perceptions of Chinese Towards Dementia in Hong Kong—Diagnosis, Symptoms and Impacts," IJERPH, MDPI, vol. 16(1), pages 1-9, January.
    5. Carmen K.M. Ng & Dara K.Y. Leung & Xinxin Cai & Gloria H.Y. Wong, 2021. "Perceived Help-Seeking Difficulty, Barriers, Delay, and Burden in Carers of People with Suspected Dementia," IJERPH, MDPI, vol. 18(6), pages 1-11, March.
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