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

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.

Catalyzing dementia care through the learning health system and consumer health information technology

“…Patients and care partners receive insufficient guidance about ADRD management. 49 The patient portal affords opportunities for disseminating education and resources in response to seminal events (e.g., hospitalization, new diagnosis), or specific health management issues (e.g., polypharmacy).…”

“…Embedding standardized screening and assessment instruments within the patient portal represents an efficient way to identify care partners’ perspectives on the needs of the person living with ADRD, as well as address unmet needs of the care partner related to knowledge of ADRD symptoms, treatments, and support. ADRD print and video education, tools, and resources may be assembled and electronically disseminated (e.g., EHR vendor “illness journey” platforms such as Epic's “Care Companion”) to address needs such as post‐diagnosis anticipatory guidance; behavioral, safety, and communication challenges; and information about and referrals to legal and financial planning 49,50 …”

Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia

“…Finally, clinicians (both neurologists and non-specialists) may benefit from more training in basic palliative care in order to work with families as early as possible in the disease progression to provide anticipatory guidance, education, and advance care planning and goal setting. 21,29…”

A Description of Persons With Alzheimer Disease and Related Dementias Receiving Home Health Care

“…The process of referral to hospice services relies greatly on clinicians. Clinician difficulty in estimating life expectancy in dementia is a main hindrance to greater use of hospice among persons with ADRD 9-11 . Previous work in the nursing home setting has shown that clinician ability to recognize terminal decline significantly influenced hospice referral and timing of referral 12 …”

“…Clinician difficulty in estimating life expectancy in dementia is a main hindrance to greater use of hospice among persons with ADRD. [9][10][11] Previous work in the nursing home setting has shown that clinician ability to recognize terminal decline significantly influenced hospice referral and timing of referral. 12 Despite the growing number of persons with ADRD who die at home each year 13 and high utilization of HHC in this population, 14 few studies have examined the endof-life trajectory among persons with ADRD in the HHC setting.…”