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

Characteristics of Changes in Caregiver Burden during Follow-up at a Memory Clinic: A Retrospective Cohort Study

“…Family caregivers of persons with dementia often report that they expect information to be provided at medical institutions, and a practice system that meets their needs is thus likely to be important [ 23 ]. It has also been noted that referrals from medical institutions to organizations that provide peer support are inadequate [ 23, 46 ]. In the present survey, only the introduction of LTCI services as a care intervention was analyzed as an explanatory factor.…”

“…From the point of view of possible interventions during follow-up at an outpatient memory clinic, referrals are made to social resources that the person with dementia can use to maintain their ADL, and advice is given on how to continue social participation, depending on their condition. For family members of persons with dementia, outpatient clinics promote understanding of the disease, provide psychological support and advice on how to cope with persons with dementia, and introduce local resources that family members of persons with dementia can use for peer support [23,45]. The regular advice given by dementia specialists varies widely depending on the situations of the patient and family caregivers.…”

“…However, it is difficult to quantify each of these as an explanatory factor and verify them statistically. Family caregivers of persons with dementia often report that they expect information to be provided at medical institutions, and a practice system that meets their needs is thus likely to be important [23]. It has also been noted that referrals from medical institutions to organizations that provide peer support are inadequate [23,46].…”

“…Dementia is a long-term disease that can last for more than a decade, and medical care that follows the long-term progress is thought to play an important role [21][22][23][24][25]. During this period, advice, medication adjustments, and information regarding the use of social resources are provided according to the symptoms of the disease at the time and expected to help reduce the burden of caregiving on family caregivers [21][22][23][24][25]. However, to date, sufficient research is lacking on the effects of longitudinal follow-up at memory clinics on reducing the caregiving burden.…”

Cuidadores Familiares De Idosos E Condições De Saúde Física, Psicológica E Apoio Familiar No Cuidado

“…Já a qualidade de vida, a autoestima e a confiança são preditores de saúde mental positiva. A necessidade de informação e suporte para os cuidadores também foi encontrada em uma pesquisa 23 nacional recente desenvolvida no Japão.…”