Clinical Care and Unmet Needs of Individuals With Dementia With Lewy Bodies and Caregivers

Abstract

Background: Patient-centered care requires understanding patient preferences and needs, but research on the clinical care preferences of individuals living with dementia and caregivers is sparse, particularly in dementia with Lewy bodies (DLB). Methods: Investigators conducted telephone interviews with individuals living with DLB and caregivers from a Lewy body dementia specialty center. Interviews employed a semistructured questionnaire querying helpful aspects of care and unmet needs. Investigators used a qualitative descriptive approach to analyze transcripts and identify themes. Results: Twenty individuals with DLB and 25 caregivers participated. Twenty-three of the caregivers were spouses, 2 were daughters. Aspects of clinical care valued by individuals with DLB and caregivers included clinician time, diagnosis, education, symptom management, communication, and caring staff. Unmet needs or challenges included patient/caregiver education, education of nonspecialist clinicians and community care providers, scheduling difficulties, caregiver support, financial concerns, assistance with advance care planning and finding local resources, and effective treatments for DLB symptoms. Conclusion and Relevance: Improving care for individuals with DLB and their families will require a multipronged strategy including education for nonspecialist care providers, increasing specialty care access, improved clinical care services, research to support disease prognosis and treatment decisions, and local and national strategies for enhanced caregiver support.

Treatment needs of dementia with Lewy bodies according to patients, caregivers, and physicians: a cross-sectional, observational, questionnaire-based study in Japan

“…However, psychiatric symptoms were the most frequently selected symptom domain for the symptom that causes the caregiver most distress. This result supports the results of a previous study that found that BPSD is the most burdensome DLB symptom for caregivers [ 19 ].…”

“…Based on these previous studies, BPSD and ADL impairments, which are associated with high caregiver burden, may be considered as caregivers’ treatment needs, but the treatment needs of the patients themselves cannot be known from these studies. Few studies have investigated the unmet needs of both patients with DLB and their caregivers [ 19 , 20 ]. In one study [ 19 ], BPSD and ADL impairments were considered as treatment needs of caregivers due to the high caregiver burden.…”

“…Few studies have investigated the unmet needs of both patients with DLB and their caregivers [ 19 , 20 ]. In one study [ 19 ], BPSD and ADL impairments were considered as treatment needs of caregivers due to the high caregiver burden. In another study [ 20 ], the sample sizes were small, and only three patients with DLB and 122 caregivers were interviewed.…”

Research Priorities of Individuals and Caregivers With Lewy Body Dementia

“…Considerable progress could be made in the care of LBD through improved utilization of existing resources (eg, the Lewy Body Dementia: Information for Patients, Families, and Professionals freely available booklet from the National Institutes on Health) 18. Barriers to such utilization, including awareness, limited time with clinicians, confusing or inconsistent terminology, and insurance coverage, must be identified and eliminated 19…”

“…18 Barriers to such utilization, including awareness, limited time with clinicians, confusing or inconsistent terminology, and insurance coverage, must be identified and eliminated. 19 Caregiving Research in LBD Given the reliance of the US healthcare system on informal caregivers for chronic disabling conditions, focused research on caregiving in LBD is essential. 5,10 The voices of LBD caregivers should be elevated within research planning and execution, leveraging their expertise and direct knowledge of the disease.…”