Factors Associated with Supportive Care Service Use Among California Alzheimer’s Disease Patients and Their Caregivers

Article type: Research Article

Authors: Newkirk, Lori A.^{a; 1; *} | Dao, Virginia L.^{a; b; 1} | Jordan, Joshua T.^{a; c} | Alving, Loren I.^d | Davies, Helen D.^e | Hewett, Linda^d | Beaudreau, Sherry A.^{a; b; e; f} | Schneider, Logan D.^{a; b; e} | Gould, Christine E.^{a; g} | Chick, Christina F.^a | Hirst, Rayna B.^h | Rose, Sophia Miryam Schüssler-Fiorenzaⁱ | Anker, Lauren A.^{a; b; e} | Tinklenberg, Jared R.^{a; b; e} | O’Hara, Ruth^{a; b; e}

Affiliations: [a] Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Stanford University, Stanford, CA, USA | [b] Sierra Pacific Mental Illness Research Education and Clinical Centers, Palo Alto, CA, USA | [c] Department of Psychiatry, University of California, San Francisco, CA, USA | [d] California Alzheimer’s Disease Center, University of California San Francisco at Fresno, Fresno, CA, USA | [e] Veterans Affairs Palo Alto Health Care System, Palo Alto, CA, USA | [f] School of Psychology, University of Queensland, Brisbane, Australia | [g] Geriatric Research Education and Clinical Center, Veterans Affairs Palo Alto Health Care System, Palo Alto, CA, USA | [h] Pacific Graduate School of Psychology, Palo Alto University, Palo Alto, CA, USA | [i] Department of Neurosurgery, Stanford University School of Medicine, Stanford, CA, USA

Correspondence: [*] Correspondence to: Lori Newkirk, BS, MBA, Stanford/VA Alzheimer’s Research Center, VA Palo Alto Health Care System (116F-PAD), 3801 Miranda Ave., Palo Alto, CA 94304, USA. Tel.: +1 650 493 5000 /x64779; Fax: +1 650 849 0183; E-mail: [email protected].

Note: [1] These authors contributed equally to this work.

Abstract: Background:Existing literature on factors associated with supportive care service (SCS) use is limited. A better understanding of these factors could help tailor SCS to the needs of frequent users, as well as facilitate targeted outreach to populations that underutilize available services. Objective:To investigate the prevalence of SCS use and to identify factors associated with, and barriers to, service use. Methods:California Alzheimer’s Disease Center patients with AD (n = 220) participated in the study from 2006-2009. Patients and their caregivers completed assessments to determine SCS use. Cognitive, functional, and behavioral status of the patients were also assessed. A two-part hurdle analysis identified 1) factors associated with any service use and 2) service use frequency among users. Results:Forty percent of participants reported using at least one SCS. Patients with more impaired cognition and activities of daily living and more of the following: total number of medications, comorbid medical conditions, and years of education were more likely to use any SCS (p < 0.05). Factors associated with more frequent SCS use included younger age, more years of education, older age of AD onset, female gender, and having a spouse or relative for a caregiver (p < 0.05). Caregivers frequently indicated insufficient time as a reason for not receiving enough services. Conclusion:Factors associated with any SCS use mostly differed from those associated with SCS frequency, suggesting different characteristics between those who initiate versus those who continue SCS use. Our findings highlight the importance of targeted education on services and identifying barriers to long-term SCS use.

Keywords: Activities of daily living, Alzheimer’s disease, caregiver burnout, dementia, family caregivers, respite care, spouse caregivers, support group

DOI: 10.3233/JAD-190438

Journal: Journal of Alzheimer's Disease, vol. 73, no. 1, pp. 77-86, 2020