Reality of Family Caregiving for Hispanics With Alzheimer's Disease and Related Dementias: A Qualitative Analysis.

Background: Underserved Hispanic patients often experience unmet palliative care (PC) needs, particularly those with noncancer diagnoses such as Alzheimer's disease and related dementias. Most caregivers for Hispanic patients are family relatives who are less likely to use health care and community resources and experience high caregiver burden. We adapted a culturally tailored patient navigator (PN) intervention to provide support and improve PC outcomes for Hispanics with Alzheimer's disease and related dementias and their family caregivers (FCGs). Objectives: To explore Hispanic FCGs' experiences and perceptions of caregiving for a loved one, and how our PN intervention impacted their needs. Design: Qualitative descriptive. Setting/Subjects: FCG participants (n = 10) from our randomized control trial's intervention group were recruited from academic and safety net hospitals and community-based clinics across urban and rural Colorado in the United States. Measurements: Data obtained from individual, semistructured, 30-minute telephone interviews were recorded, transcribed, translated, and analyzed using NVivo and qualitative thematic analyses. Results: Four major themes emerged: Methods of Support, Cultural Expectations and Varying Family Contributions, Lack of Self-Care, and Awareness. Subthemes highlighted differing definitions of "contributing," role resentment, and interpersonal issues. Varying familial expectations underscore FCG strain when the burden of caregiving is not shared. Participants used various coping strategies as necessary support and gained awareness through education, guidance, and referrals to resources. Conclusions: PNs helped FCGs and patients beyond the intervention's scope. Providing support and awareness to FCGs, and incorporating cultural beliefs, may improve PC access to disparate populations and guide future interventions. Clinical Trial Registration Number NCT03181750.

Lesbian, Gay, and Bisexual Widows' Experiences of Grief, Identity, and Support: A Qualitative Study of Relationships Following the Loss of a Spouse or Partner.

OBJECTIVES: Research with lesbian, gay, and bisexual (LGB) older widows rarely focuses on familial relationships. Studies on heterosexual spousal bereavement indicate older widows face issues influencing identity but show resilience by maintaining close relationships with adult children and extended family. Though research with older LGB widows suggests similarities around loss and resilience, grief and family engagement are markedly different. METHODS: Guided by Relational Cultural Theory, which illuminates how LGB women cope through connection/disconnection, this qualitative descriptive study employed semistructured, open-ended interviews with 16 LGB women, 60-85 years of age from across the United States who had lost a spouse or partner within the past 5 years. We conducted interviews regarding the perception of self as bereaved LGB women and sustained or altered relationships with biological and chosen families following the loss of their spouses/partners. RESULTS: Findings are illustrated in three themes around acceptance, support, and identity. Participants: (a) experienced differing levels of acceptance, tolerance, and inclusion from biological families; (b) experienced family or friends "disappearing" or providing critical support following a spouse/partner's death; and (c) negotiated challenges by creating or seeking out families of choice, new communities, and a better understanding of themselves. DISCUSSION: While LGB widows share some grief experiences with heterosexual widows, they also experience varying biological family acceptance and support, as well as the need for friends and families of choice as advocates. It is important to recognize the unique consequences of spousal loss for this population and be cognizant of the differences in normative grief.

"By the time she got sick it was just kind of too late": A qualitative study on advanced care planning among bereaved lesbian, gay, and bisexual older women.

BACKGROUND: Lesbian, gay, and bisexual (LGB) older women have unmet communication needs around palliative and end-of-life care. Past research has found communication differences for LGB women patients. Consequently, older LGB women may experience healthcare communication barriers around advance care planning. AIM: To explore experiences of bereaved LGB older women to understand perspectives regarding advance care planning communication between clinicians, patients, and dyads. DESIGN: Guided by queer gerontology as a theoretical framework, this qualitative descriptive study employed individual interviews with purposively recruited participants. Interviews were conducted in person using a semi structured protocol and analyzed using inductive thematic analysis. SETTING/PARTICIPANTS: Sixteen LGB women, age 60 years or older from across the United States who had lost a spouse/partner within the past 5 years. RESULTS: Four main themes emerged from the transcripts, LGB older women: (1) experience unclear advance care planning communication and end-of-life care support from clinicians, (2) often avoid advance care planning discussions with spouse or partners, (3) lack of knowledge about palliative or end-of-life care, and (4) have more positive experiences when there is consistent communication with spouse or partner and clinicians during a spouse/partner's illness and end-of-life. DISCUSSION: While certain experiences and opinions may reflect those of non-LGB older adults, novel advance care planning barriers exist for LGB older women. Greater understanding among clinicians is needed regarding advance care planning conversations with LGB dyads. We recommend four improvements in training, recognition, acceptance, and dyad-based communication interventions.

We Speak a Different Language: End-of-Life and Bereavement Experiences of Older Lesbian, Gay, and Bisexual Women Who Have Lost a Spouse or Partner.

We examine the end-of-life (EOL) experiences, communications, and grief support during and after their loved one's death of older lesbian, gay, and bisexual women (LGB) ages 60 to 85 who have lost a spouse or partner. Queer gerontology was used as a theoretical framework, and descriptive qualitative analytical methods were used to discern themes. Through semi-structured interviews with a purposive sample of 16 participants, we identified two main themes: Gathering the Women and Compassionate Care. Although older LGB women may have some similar support needs as non-LGB adults, other needs are distinct but often unmet. While our participants' interactions with health care professionals were overtly positive, there was often a lack of communication about grief resources, including lesbian and women-specific grief groups. Overall researchers, policymakers, and practitioners should be mindful of the importance of fully integrating and including populations into their care practices to avoid creating systems of superficial tolerance.

Prevalence and predictors of depressive symptoms in older adults with cancer.

INTRODUCTION: Older adults with cancer are at risk of developing depressive symptoms. However, little is known about the prevalence and predictors of depressive symptoms in older adults with cancer. MATERIALS AND METHODS: This study examined the prevalence and predictors of depressive symptoms among older adults with cancer in the United States using the data from the 2012 and 2014 wave of the Health and Retirement Study. This analysis included 1799 older adults aged 65 and over with a self-reported diagnosis of cancer. Multivariate regression analysis was used to examine the predictors of depressive symptoms. The main predictors included age, gender, race, education, marital status, chronic conditions, and functional limitations. RESULTS: Results revealed that the prevalence of depressive symptoms in older adults with cancer was 14.9%. Results of Poisson regression revealed that greater age, belonging to a race other than White or African American, not being married, presence of more chronic conditions, and higher levels of functional limitations were associated with higher levels of depressive symptoms. DISCUSSION: The prevalence of depressive symptoms is high in older adults with cancer and several factors predict depressive symptoms in this population. Individuals who are at high risk of developing depressive symptoms should be identified and appropriate timely interventions should be initiated to reduce the rates of depressive symptoms in older adults with cancer.

Experiences of Palliative and End-of-Life Care among Older LGBTQ Women: A Review of Current Literature.

Background: Understanding end-of-life (EOL) and palliative care continues to grow. However, little attention has been paid to the experiences, preferences, and needs of older lesbian, gay, bisexual, transgender, and queer (LGBTQ) women. While some universal expectations or preferences at EOL exist, this population may not receive adequate or appropriate attention or reporting of unique EOL issues and experiences. Objective: Systematically search for and narratively review existing evidence concerning the expectations, preferences, and needs for palliative and EOL care of LGBTQ older women. Design: A comprehensive literature review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Articles reporting needs, experiences, and perspectives of palliative care and EOL care among LGBTQ older women were evaluated. Measurements: Articles published between 1996 and 2019 were retrieved from PsycINFO, MEDLINE, Cochrane Library, Academic Search Complete, AgeLine, CINHAL, PubMed, LGBT Life, SocINDEX, Women's Studies International, Joanna Briggs Institute, and Open Grey. Results: A total of 16 articles were included. Articles described several concerns for the overall LGBTQ population; however, additional issues and experiences specific to older LGBTQ women were also identified, including vulnerability associated with isolation and poverty, women's social needs and support networks, and preferences for complementary care. Conclusion: There remains a need for further research with older LGBTQ women concerning palliative and EOL care, particularly around preparation for EOL and preferences for support. Inclusion of diverse populations in terms of sexual and gender identification are needed to fully understand how to provide appropriate and preferred support.