"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.

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.

Changes in older adults' life space during lung cancer treatment: A mixed methods cohort study.

BACKGROUND: Maintenance of function during cancer treatment is important to older adults. Characteristics associated with pretreatment life-space mobility and changes during non-small cell lung cancer (NSCLC) treatment remain unknown. METHODS: This mixed methods cohort study recruited adults age ≥65 with advanced NSCLC starting palliative chemotherapy, immunotherapy, and/or targeted therapy from a Comprehensive Cancer Center, Veterans Affairs, and safety-net clinic. Patients completed geriatric assessments including Life-Space Assessment (LSA) pretreatment and at 1, 2, 4, and 6 months after treatment initiation. LSA scores range from 0 to 120 (greater mobility); LSA <60 is considered restricted. We used mixed-effects models to examine pretreatment LSA, change from 0 to 1 month, and change from 1 to 6 months. A subgroup participated in semistructured interviews pretreatment and at 2 and 6 months to understand the patient experience of life-space change. For each interview participant, we created joint displays of longitudinal LSA scores juxtaposed with illustrative quotes. RESULTS: Among 93 patients, median age was 73 (range 65-94). Mean pretreatment LSA score was 67.1. On average, LSA declined 10.1 points from pretreatment to 1 month and remained stable at 6 months. Pretreatment LSA score was associated with several demographic, clinical, geriatric assessment, and symptom characteristics. LSA decline at 1 month was greater among patients with high anxiety (slope = -12.6 vs. -2.3, p = 0.048). Pretreatment body mass index <21 kg/m2 was associated with LSA improvement from 1 to 6 months (slope = 4.1 vs. -0.04, p = 0.003). Joint displays illustrated the impact of different life-space trajectories on patients' lives in their words. CONCLUSION: Older adults with NSCLC have low pretreatment life space with many developing restricted life space during treatment. Incorporating life-space assessments into clinical cancer care may help older adults concretely visualize how treatment might impact their daily function to allow for informed decision making and identify early changes in mobility to implement supportive interventions.

"Now I Write Songs": Growth and Reciprocity After Long-Term Nursing Home Placement.

BACKGROUND AND OBJECTIVES: Nursing home residents have a need for activities that are meaningful, yet mandated scheduled activities remain poorly characterized. In order to understand how scheduled activities provide meaning for nursing home residents, we conducted a study of daily life in a nursing home with a robust activities program. RESEARCH DESIGN AND METHODS: This 2-year, longitudinal ethnographic study embedded an ethnographer into the activities department of a 430-bed, not-for-profit, faith-based nursing home. Forty-three interviews and more than 250 hr of participant-observation were conducted, with a focus on creative arts and religious activities. Thirty-two residents and 15 activities staff were followed more than 12-23 months. Data were coded concurrently, and emerging themes challenged through purposive recruitment until thematic saturation was reached. RESULTS: Scheduled activities in the nursing home offered opportunities for learning and personal growth regardless of functional or cognitive disability. Three major themes emerged. Artistic development included new self-identification as a musician, painter, or sculptor through arts programming. Intellectual and spiritual growth involved the use of activities to support ongoing practice and study. Reciprocity occurred as residents used the arts to remain contributing members of their institutional society, reciprocating with the institution that housed them. DISCUSSION AND IMPLICATIONS: Nursing home scheduled activities can facilitate the transformation of identity from resident or patient to the normalized social roles of artist, Torah scholar, and productive member of society.

Rehabbed to Death: Breaking the Cycle.

Many older adults transfer from the hospital to a post-acute care (PAC) facility and back to the hospital in the final phase of life. This phenomenon, which we have dubbed "Rehabbing to death," is emblematic of how our healthcare system does not meet the needs of older adults and their families. Policy has driven practice in this area including seemingly benign habits such as calling PAC facilities "rehab." We advocate for practice changes: (1) calling PAC "after-hospital transitional care," rather than "rehab"; (2) adopting a serious illness communication model when discussing new care needs at the end of a hospitalization; and (3) policies that incentivize comprehensive care planning for older adults across all settings and provide broad support and training for caregivers. In realigning health and social policies to meet the needs of older adults and their caregivers, fewer patients will be rehabbed to death, and more will receive care consistent with their preferences and priorities. J Am Geriatr Soc 67:2398-2401, 2019.

Serving the Very Sick, Very Frail, and Very Old: Geriatrics, Palliative Care, and Clinical Ethics.

How can we provide the best care for growing numbers of very frail, very sick, or very old people? The disciplines of geriatrics, palliative care, and clinical ethics each have a good deal to offer to improve care for elders, yet each field is saddled with heavy historical baggage. Using a case as a springboard, we address specific strengths and shortcomings of each field, and what these disciplines can learn from each other. Geriatrics is currently largely focused on prevention of disability, cognitive impairment, and death; it should reorganize around a palliative approach to providing care for elders living with multiple chronic conditions, disability, and dementia. Palliative care, while paying some attention to the spectrum of advanced illness, concentrates primarily on cancer; it should expand its central purpose to include providing supportive care to elders with serious illness and their caregivers. Ethics committee members and consultants principally stress individual autonomy; they need to expand their approach and develop longitudinal relationships with patients and family members, routinely incorporating them in deliberations and the crafting of recommendations. However, improving these three disciplines will only go so far toward improving the care of very frail, very sick, or very old people. What is most needed is longitudinal care provided by interdisciplinary primary care teams steeped in the core principles of all three disciplines.

The diverse landscape of palliative care clinics.

BACKGROUND: Many health care organizations are interested in instituting a palliative care clinic. However, there are insufficient published data regarding existing practices to inform the development of new programs. OBJECTIVE: Our objective was to obtain in-depth information about palliative care clinics. METHODS: We conducted a cross-sectional survey of 20 outpatient palliative care practices in diverse care settings. The survey included both closed- and open-ended questions regarding practice size, utilization of services, staffing, referrals, services offered, funding, impetus for starting, and challenges. RESULTS: Twenty of 21 (95%) practices responded. Practices self-identified as: hospital-based (n=7), within an oncology division/cancer center (n=5), part of an integrated health system (n=6), and hospice-based (n=2). The majority of referred patients had a cancer diagnosis. Additional common diagnoses included chronic obstructive pulmonary disease, neurologic disorders, and congestive heart failure. All practices ranked "pain management" and "determining goals of care" as the most common reasons for referrals. Twelve practices staffed fewer than 5 half-days of clinic per week, with 7 operating only one half-day per week. Practices were staffed by a mixture of physicians, advanced practice nurses or nurse practitioners, nurses, or social workers. Eighteen practices expected their practice to grow within the next year. Eleven practices noted a staffing shortage and 8 had a wait time of a week or more for a new patient appointment. Only 12 practices provide 24/7 coverage. Billing and institutional support were the most common funding sources. Most practices described starting because inpatient palliative providers perceived poor quality outpatient care in the outpatient setting. The most common challenges included: funding for staffing (11) and being overwhelmed with referrals (8). CONCLUSIONS: Once established, outpatient palliative care practices anticipate rapid growth. In this context, outpatient practices must plan for increased staffing and develop a sustainable financial model.