Noriko Yamamoto-Mitani

When caregiving ends: The course of depressive symptoms after bereavement

This study describes depressive symptoms among caregivers following bereavement and connects these trajectories to earlier features of caregiving using life course and stress process theory. Data are from a six-wave longitudinal survey (five years) of spouses and adult children caring for someone with Alzheimers Disease. The analytic subsample (N = 291) is defined by death of the care-recipient after the baseline interview. A latent class mixture model is used to identify distinctive clusters of depressive symptoms over time. Of the four trajectories identified, three represent stable symptom levels over time, with two-thirds being repeatedly symptomatic (medium symptom levels), compared to two smaller groups of repeatedly asymptomatic (effectively absent of symptoms) and repeatedly distressed (severe symptoms). In contrast, about one in five caregivers experiences improved emotional well-being over time, the temporarily distressed, who progress from severe to moderate symptom levels. Caregivers with few symptoms before bereavement tend to maintain these states afterwards, but emotionally distressed caregivers tend to become more distressed. Role overload before bereavement substantially increases the odds of following an unfavorable trajectory afterwards, whereas self-esteem and socioemotional support play protective roles. These results demonstrate that caregivers are not uniform in their emotional responses to bereavement, but follow several distinct trajectories. These trajectories are linked to their previous experiences as caregivers, in particular exposure to stressors and access to resources. These findings suggest that intervention during caregiving may facilitate adaptation following death of a loved one.

The Meaning of Family Caregiving in Japan and the United States: A Qualitative Comparative Study

This study explores how cultural values affect the meaning and experiences of daughter (or daughter-in-law) caregivers of elderly persons with dementia by comparing caregivers in the United States and Japan. Nine American and seven Japanese caregivers were interviewed twice at 6-month intervals. Interviews were audiotaped and analyzed using constant-comparative techniques. Data suggest that moral obligation to care and intense loss are two universal themes of caregiving. However the experiences and perceptions of the role of caregivers from these two cultures differed in select ways that were captured within three categories: reasons for caregiving, caregiving as a career, and caregiving as a life phase or detour. Findings suggest that American caregivers may need greater anticipatory socialization regarding the caregiving role, whereas Japanese caregivers may benefit from assistance in accepting needed services.

A Standardized Quality Assessment System to Evaluate Pain Detection and Management in the Nursing Home

CONTEXT Assessment and management of pain for nursing home residents is frequently reported to be inadequate, yet few studies have used objective criteria to measure the quality of care related to pain. OBJECTIVE Field test a standardized resident interview and medical record review protocol to assess and score quality indicators relevant to pain. DESIGN Descriptive. SETTING Thirty nursing homes (NHs). PARTICIPANTS Seven hundred ninety-four residents met overall eligibility criteria. Quality indicators were scored for those residents who met specific eligibility requirements for each pain indicator. MEASUREMENTS Medical record reviews were completed for 542 participants, and data were used to score 12 indicators related to pain assessment, management, and response to treatment. A seven-item pain interview was attempted with all 794 participants and completed with 478 participants who were rated by NH staff as cognitively aware. RESULTS Quality indicators could be reliably scored. Physicians scored low on assessment of pain, performing targeted history and physical examinations, documenting risk factors for use of analgesics, and documenting response to treatment. Forty-eight percent of participants (227/478) reported symptoms of chronic pain during the interview, and 81% of this group reported a preference for a pain medication. However, nearly half had no physician assessment of pain in the past year and only 42% were receiving pain medication. Licensed nurse assessments of pain were documented weekly; but, more than 50% of those reporting symptoms of chronic pain on interview had nurse pain scores of 0 for 4 consecutive weeks prior to interview. CONCLUSIONS Infrequent or incomplete physician pain assessment and treatment and inaccurate documentation by licensed nurses limits evaluation of pain care quality based on medical record review alone. A brief resident interview identified participants reporting symptoms of chronic pain not documented in the medical record and those with a preference for medication. Initial targeting of residents with self-reported pain maximizes the efficiency of the standardized scoring system described in this study. Focusing on explicit process measures clearly identifies areas for improvement and represents an important step in assessing the quality of pain care in the NH.

Pursuit of psychological well-being (ikigai) and the evolution of self-understanding in the context of caregiving in Japan.

Using the Japanese concept of ikigai, which describes a certain state ofpsychological well-being, this study exploreshow Japanese family caregivers of elderlyparents with dementia pursue, maintain, orattempt to regain their psychologicalwell-being in the face of the hardship ofcaregiving. Using constant comparativemethodology, twenty-six Japanese women who werecaring for an elderly demented parent orparent-in-law were interviewed. Based on theanalysis of interview data, we defineikigai as certain life experiences and/or thepositive emotion felt through those experiencesthat allow the caregiver to judge her life asgood and meaningful, and to feel that it isworthwhile to continue living. Caregivers usevarious different means to pursue theirikigai depending on the context of care. Thetypes of their pursuit of ikigai areexamined in varying contexts of caregiving.Because the data suggest that ikigaiexperience influences how the caregiversself-understanding changes over time, thenotion of ikigai is further explored inrelation to the construct of self-understanding.

Subjective quality of life and positive appraisal of care among Japanese family caregivers of older adults

Most family caregiving research has portrayed caregiving as a negative life experience for caregivers, but a broader perspective is necessary to examine its impact on the caregiver quality of life (QL). The role that positive appraisal of care plays in the caregiving experience among Japanese families of older adults was examined in relation to the caregivers subjective QL. Positive as well as negative appraisal of care was measured by a newly developed multi-dimensional scale, which included the domains of ‘relationship satisfaction,’ ‘role confidence,’ ‘consequential gain,’ ‘normative fulfillment’ (positive appraisal), ‘role exhaustion,’ ‘isolation,’ ‘relationship difficulty,’ and ‘symptom management difficulty’ (negative appraisal). Subjective QL was measured by WHO/QL-26. Altogether 337 Japanese family caregivers participated in this survey. Stepwise multiple regression analyses revealed that ‘role confidence,’ ‘normative fulfillment,’ and ‘role exhaustion’ had a significant independent impact on physical QL, while ‘role confidence’ and ‘role exhaustion’ on psychological QL. The association of ‘normative fulfillment’ with physical QL was negative while that of ‘role confidence’ was positive, despite the positive correlation between the two domains. The results underline the importance of considering positive as well as negative appraisal of care when examining subjective QL of the family caregivers.

The impact of subject/respondent characteristics on a proxy-rated quality of life instrument for the Japanese elderly with dementia

The development of a quality of life (QL) instrument for evaluating quality of services requires extensive validation. This study examines the impact of subject/respondent characteristics on a newly developed quality of life instrument for the Japanese elderly with dementia (QLDJ) as a part of the validity examination. In the QLDJ, QL is defined as a three-dimensional construct:‘interacting with surroundings’, ‘expressing self’, and ‘experiencing minimum negative behaviors’. Thus the QLDJ is a multi-dimensional, 24-item instrument, and it is answered by a proxy, the formal caregiver (respondent) because the elderly with severe dementia cannot be directly interviewed. Altogether 623 elderly persons experiencing dementia from 37 institutions (e.g., nursing homes, day care centers) in Japan were assessed using the QLDJ by their formal caregivers. In addition to the levels of dementia and independence in activities of daily living, factors such as gender of the elderly person and respondent, elderly persons age, participation in recreational activities, qualification of the respondent were significantly associated with ‘interacting with surroundings’ and ‘expressing self’. The levels of dementia and independence as well as qualification of the respondent were associated with ‘experiencing minimum negative behaviors’. Possible reasons for these associations and how to deal with them are discussed. Careful control for those factors is needed when the QLDJ is used in future research.

Development of a Japanese Quality of Life Instrument for Older Adults Experiencing Dementia (QLDJ).

This study develops a quality of life instrument for older Japanese people experiencing dementia (QLDJ). Quality of life (QL) for these older adults is defined as a three dimensional construct including 1) interacting with surroundings, 2) expressing self, and 3) experiencing minimum negative behaviors. From 53 items in the initial item pool, 24 were selected based on item reliability and validity using data from 3 studies that involve ten dementia-care experts (Study A) and 36 and 623 older persons and their formal caregivers in various care settings (Study B & C). Factor analysis of these items identified three domains that correspond to the conceptual definition of QL for older adults with dementia. The domain and total QL scores were calculated considering the relative weights of each item. Resultant domain and total scores of the QLDJ showed satisfactory reliability and evidence of validity.