Background Medication management is undertaken by caregivers of people who have intellectual or developmental disabilities. Objective The objectives were to measure the medication management hassles reported by caregivers of adults who have intellectual or developmental disabilities and to describe associations between characteristics of caregivers, medication regimens, and the person with intellectual or developmental disability and the scale score. Setting Web-based survey conducted in the United States. Method A newsletter announcement with a link to the survey was sent to members of a disability advocacy organization. Caregivers were age 18 years and older who manage medications for adults with intellectual or developmental disabilities. The survey questions were used to obtain characteristics of the caregiver, the medication regimen they managed, and the care-recipient. The study was approved by the Institutional Review Board of Michigan Medicine (HUM00091002). Main outcome measure The Family Caregiver Medication Administration Hassles Scale (caregiver scale). Results Forty-two caregivers responded, with 41 being female with a mean age of 56.7 years. The mean caregiver scale score was 28.9 (possible range 0–120). Highest scores (greatest hassles) were significantly associated with a greater level of support required by the care-recipient, stronger caregiver beliefs of the necessity of medication and concern about using medications, lack of previous caregiver health-care training, and being an employed caregiver rather than family member. Conclusion Medication management can contribute to caregiver stress. Pharmacists should ensure that caregivers are counseled about medication that they manage, be accessible for questions, and examine medication regimens to reduce polypharmacy and complexity of regimens.
Caregiver Challenges Health literacy Intellectual developmental disability Medication beliefs Medication complexity Medication use process
This is a preview of subscription content, log in to check access.
The authors would like to acknowledge the Arc for their assistance in distributing the survey and to the Arc members who completed the survey.
This study was conducted without funding.
Conflicts of interest
The authors have no conflicts of interest to report related to conducting this project or preparing the manuscript.
This study was approved by the University of Michigan Human Investigations Committee, IRB # HUM00091002.
Erickson SR, Nicaj D, Barron S. Complexity of medication regimens of people with intellectual and developmental disabilities. J Intellect Dev Disabil. 2018;43:351–61.CrossRefGoogle Scholar
Kaasalainen S, Dolovich L, Papaioannou A, Holbrook A, Lau E, Ploeg J, et al. The process of medication management for older adults with dementia. J Nurs Healthc Chronic Illn. 2011;3:407–18.CrossRefGoogle Scholar
Cotrell V, Wild K, Bader T. Medication management and adherence among cognitively impaired older adults. J Gerontol Soc Work. 2006;47:31–46.CrossRefGoogle Scholar
Gillespie R, Mullan J, Harrison L. Managing medications: the role of informal caretakers of older adults and people living with dementia. A review of the literature. J Clin Nurs. 2014;23:3296–308.CrossRefGoogle Scholar
Gillespie RJ, Harrison L, Mullan J. Medication management concerns of ethnic minority family caregivers of people with dementia. Dementia. 2015;14:47–62.CrossRefGoogle Scholar
Travis SS, McAuley WJ, Dmochowski J, Bernard MA, Kao HFS, Greene R. Factors associated with medication hassles experienced by family caregivers of older adults. Patient Educ Couns. 2007;66:51–7.CrossRefGoogle Scholar
Langa KM, Chernew ME, Kabeto MU, Herzog AR, Ofstedal MB, Willis RJ, et al. Natinal estimates of the quantity and cost of informal caregiving in the elderly with demential. J Gen Intern Med. 2001;16:770–8.CrossRefGoogle Scholar
Chew LD, Bradley KA, Boyko EJ. Brief questions to identify patients with inadequate health literacy. Fam Med. 2004;36:588–94.Google Scholar
Schwartz KL, Bartoces M, Campbell-Voytal K, West P, Monsur J, Sartor A, et al. Estimating health literacy in family medicine clinics in metropolitan Detroit: a MetroNet study. J Am Board Fam Med. 2013;26:566–70.CrossRefGoogle Scholar
Bauer AM, Schillinger D, Parker MM, Katon W, Adler N, Adams AS, et al. Health literacy and antidepressant medication adherence among adults with diabetes: the Diabetes Study of Northern California (DISTANCE). J Gen Intern Med. 2013;28:1181–7.CrossRefGoogle Scholar
Horne R, Weinman J, Hankins M. The beliefs about medicines questionnaire: the development and evaluation of a new method for assessing the cognitive representation of medication. Psychol Health. 1999;14:1–24.CrossRefGoogle Scholar