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  1. Article ; Online: Care Setting Transitions for People With Dementia: Qualitative Perspectives of Current and Former Care Partners.

    Radcliffe, Kate G / Halim, Madina / Ritchie, Christine S / Maus, Marlon / Harrison, Krista L

    The American journal of hospice & palliative care

    2023  Volume 40, Issue 12, Page(s) 1310–1316

    Abstract: Care partners (CP) of people with dementia (PWD) report that decisions about care setting are aided by the support of healthcare providers. However, providers are often underprepared to offer adequate counseling. This qualitative study aimed to identify ... ...

    Abstract Care partners (CP) of people with dementia (PWD) report that decisions about care setting are aided by the support of healthcare providers. However, providers are often underprepared to offer adequate counseling. This qualitative study aimed to identify what support from providers will assist CPs in making decisions related to care setting throughout the dementia journey. We conducted semi-structured interviews with current CPs of PWD and former CPs of decedents. We utilized the constant comparative method to identify themes regarding preferences around care setting as the PWD progressed from diagnosis to end-of-life. Participants were 31 CPs, including 16 current and 15 former CPs. CPs had a mean age of 67 and were primarily white (n = 23/31), female (n = 21/31), and spouses (n = 24/31). Theme 1: Current CPs discussed overwhelming uncertainty pertaining to care setting, expressing "I don't know when I need to plan on more care," and a desire to understand "what stage we are at." Theme 2: Later in the disease, former CPs wanted guidance from healthcare providers on institutional placement ("I sure would've loved some help finding better places") or support to stay in the home ("a doctor had to come to the house"). CPs want early, specific guidance from healthcare providers related to transitions between home and long-term care. Early in the disease course, counseling geared toward prognosis and expected disease course helps CPs make plans. Later, caregivers want help identifying locations or institutionalization or finding home care resources.
    MeSH term(s) Humans ; Female ; Aged ; Caregivers/psychology ; Decision Making ; Health Personnel ; Home Care Services ; Qualitative Research ; Dementia
    Language English
    Publishing date 2023-02-02
    Publishing country United States
    Document type Journal Article
    ZDB-ID 1074344-3
    ISSN 1938-2715 ; 1049-9091
    ISSN (online) 1938-2715
    ISSN 1049-9091
    DOI 10.1177/10499091231155601
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: "Relationships, Very Quickly, Turn to Nothing": Loneliness, Social Isolation, and Adaptation to Changing Social Lives Among Persons Living With Dementia and Care Partners.

    Kotwal, Ashwin A / Allison, Theresa A / Halim, Madina / Garrett, Sarah B / Perissinotto, Carla M / Ritchie, Christine S / Smith, Alexander K / Harrison, Krista L

    The Gerontologist

    2024  Volume 64, Issue 4

    Abstract: Background and objectives: Persons with dementia and their care partners have known risks for loneliness and social isolation throughout the disease trajectory, yet little is described about social lives in a population heterogeneous for disease stage, ... ...

    Abstract Background and objectives: Persons with dementia and their care partners have known risks for loneliness and social isolation throughout the disease trajectory, yet little is described about social lives in a population heterogeneous for disease stage, syndrome type, and setting.
    Research design and methods: We conducted a secondary analysis of qualitative interviews from multiple studies to triangulate responses from a cohort of persons with dementia (n = 24), and active (n = 33) or bereaved (n = 15) care partners diverse in setting, dementia type and stage, and life experience. Interviews explored challenges related to social lives and were analyzed thematically.
    Results: Persons with dementia were on average 80 years old (range: 67-94), 38% female, and 78% diagnosed with Alzheimer's dementia; care partners were on average 67 years old (range: 40-87) and 69% female. We identified 3 primary themes. First, dyads lost external social networks due to complex factors, including discomfort of surrounding social networks, caregiving responsibilities, and progressive cognitive deficits. Second, care partners described disruptions of meaningful dyadic relationships due to progressive cognitive and functional deficits, leading to loneliness and anticipatory grief. Third, adaptive strategies centered on care partners facilitating shared social activities and programs addressing caregiver burden. An overarching theme of disease-course accumulation of barriers to social interactions and constant adaptations was present in all themes.
    Discussion and implications: Isolation and loneliness are a shared experience and source of distress for persons with dementia and care partners. Results can inform interventions tailored to individual needs and disease stages of dyads that enhance social connectedness.
    MeSH term(s) Humans ; Female ; Aged, 80 and over ; Aged ; Male ; Loneliness ; Dementia/psychology ; Caregivers/psychology ; Social Isolation ; Alzheimer Disease
    Language English
    Publishing date 2024-03-18
    Publishing country United States
    Document type Journal Article
    ZDB-ID 216760-8
    ISSN 1758-5341 ; 0016-9013
    ISSN (online) 1758-5341
    ISSN 0016-9013
    DOI 10.1093/geront/gnae014
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: "I Didn't Sign Up for This": Perspectives from Persons Living with Dementia and Care Partners on Challenges, Supports, and Opportunities to Add Geriatric Neuropalliative Care to Dementia Specialty Care.

    Harrison, Krista L / Garrett, Sarah B / Halim, Madina / Bernstein Sideman, Alissa / Allison, Theresa A / Dohan, Daniel / Naasan, Georges / Miller, Bruce L / Smith, Alexander K / Ritchie, Christine S

    Journal of Alzheimer's disease : JAD

    2022  Volume 90, Issue 3, Page(s) 1301–1320

    Abstract: Background: In the United States, dementia specialty centers affiliated with centers of excellence for research hold promise as locations to develop innovative, holistic care in care systems otherwise siloed by discipline or payer.: Objective: We ... ...

    Abstract Background: In the United States, dementia specialty centers affiliated with centers of excellence for research hold promise as locations to develop innovative, holistic care in care systems otherwise siloed by discipline or payer.
    Objective: We conducted foundational research to inform development of patient-and family-centered palliative care interventions for dementia specialty centers.
    Methods: We interviewed persons living with dementia (PLWD), current, and former care partners (CP) recruited from a specialty dementia clinic and purposively selected for variation across disease syndrome and stage. A framework method of thematic analysis included coding, analytic matrices, and pattern mapping.
    Results: 40 participants included 9 PLWD, 16 current CPs, and 15 former CPs of decedents; 48% impacted by Alzheimer's disease dementia. While help from family, support groups and adult day centers, paid caregiving, and sensitive clinical care were invaluable to PLWD, CPs, or both, these supports were insufficient to navigate the extensive challenges. Disease-oriented sources of distress included symptoms, functional impairment and falls, uncertainty and loss, and inaccessible care. Social and relational challenges included constrained personal and professional opportunities. The obligation and toll of giving or receiving caregiving were challenging. Clinical care challenges for PLWD and/or CPs included care fragmentation, insufficient guidance to inform planning and need for expert interdisciplinary clinical care at home.
    Conclusion: Findings highlight the breadth and gravity of gaps, which surpass the disciplinary focus of either behavioral neurology or palliative care alone. Results can inform the development of novel interventions to add principles of geriatrics and neuropalliative care to dementia care.
    MeSH term(s) Humans ; Aged ; Caregivers ; Dementia/therapy ; Alzheimer Disease/therapy ; Palliative Care ; Geriatrics
    Language English
    Publishing date 2022-10-16
    Publishing country Netherlands
    Document type Journal Article ; Research Support, Non-U.S. Gov't ; Research Support, N.I.H., Extramural ; Research Support, U.S. Gov't, P.H.S.
    ZDB-ID 1440127-7
    ISSN 1875-8908 ; 1387-2877
    ISSN (online) 1875-8908
    ISSN 1387-2877
    DOI 10.3233/JAD-220536
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    In stock of ZB MED Cologne/Königswinter

    Zs.A 6084: Show issues Location:
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