“Captive by the Uncertainty”—Experiences with Anticipatory Guidance for People Living with Dementia and Their Caregivers at a Specialty Dementia Clinic

Article type: Research Article

Authors: Shafir, Adi^{a; b; i; *} | Ritchie, Christine S.^{a; e; g} | Garrett, Sarah B.^{a; c} | Bernstein Sideman, Alissa^{c; d; g} | Naasan, Georges^{f; g} | Merrilees, Jennifer^h | Widera, Eric^{a; b} | Flint, Lynn^{a; b} | Harrison, Krista L.^{a; c; g}

Affiliations: [a] Division of Geriatrics, Department of Medicine, University of California, San Francisco, San Francisco, CA, USA | [b] Department of Veterans Affairs Medical Center, San Francisco, CA, USA | [c] Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco, San Francisco, CA, USA | [d] UCSF Department of Humanities & Social Sciences, San Francisco, CA, USA | [e] Division of Palliative Care and Geriatric Medicine and the Mongan Institute Center for Aging and Serious Illness, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA | [f] The Barbara and Maurice Deane Center for Wellness and Cognitive Health, Department of Neurology, Mount Sinai, Icahn School of Medicine, New York, NY, USA | [g] Global Brain Health Institute, University of California, San Francisco, San Francisco, CA, USA | [h] UCSF Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA | [i] Division of General Internal Medicine and Geriatrics, Oregon Health and Sciences University, Portland, OR, USA

Correspondence: [*] Correspondence to: Adi Shafir, Oregon Health & Science University, 3181 SW Sam Jackson Park Rd, OC14HO, Portland, OR 97239, USA. E-mail: shafira@ohsu.edu.

Abstract: Background:After a diagnosis of Alzheimer’s disease and related disorders, people living with dementia (PWD) and caregivers wonder what disease trajectory to expect and how to plan for functional and cognitive decline. This qualitative study aimed to identify patient and caregiver experiences receiving anticipatory guidance about dementia from a specialty dementia clinic. Objective:To examine PWD and caregiver perspectives on receiving anticipatory guidance from a specialty dementia clinic. Methods:We conducted semi-structured interviews with PWD, and active and bereaved family caregivers, recruited from a specialty dementia clinic. Interviews were recorded, transcribed, and systematically summarized. Thematic analysis identified anticipatory guidance received from clinical or non-clinical sources and areas where respondents wanted additional guidance. Results:Of 40 participants, 9 were PWD, 16 were active caregivers, and 15 were bereaved caregivers. PWD had a mean age of 75 and were primarily male (n = 6/9); caregivers had a mean age of 67 and were primarily female (n = 21/31). Participants felt they received incomplete or “hesitant” guidance on prognosis and expected disease course via their clinicians and filled the gap with information they found via the internet, books, and support groups. They appreciated guidance on behavioral, safety, and communication issues from clinicians, but found more timely and advance guidance from other non-clinical sources. Guidance on legal and financial planning was primarily identified through non-clinical sources. Conclusion:PWD and caregivers want more information about expected disease course, prognosis, and help planning after diagnosis. Clinicians have an opportunity to improve anticipatory guidance communication and subsequent care provision.

Keywords: Caregiver, communication, dementia, patients, prognosis

DOI: 10.3233/JAD-215203

Journal: Journal of Alzheimer's Disease, vol. 86, no. 2, pp. 787-800, 2022