Managing medications: the role of informal caregivers of older adults and people living with dementia. A review of the literature

Abstract

Aims and objectives To explore published literature that describes what is known about the role of informal caregivers as they manage medications for older adults and/or people living with dementia residing in the community. Background The number of informal caregivers of older adults, including people living with dementia, is growing worldwide. Good medication management by informal caregivers contributes to improved health outcomes and reduced institutionalisations for the care recipient; however, little is known about this domain of care. Design Narrative review. Methods A literature search was conducted to identify relevant research articles written in English between January 2000-April 2013, sourced from online database searches using multiple keywords, reviewing reference lists and citations of key articles and Internet searches. Articles were included if they described informal caregiver medication management for older adults and/or people living with dementia. Results Ten articles were found that described this role from the perspective of the informal caregiver. The evidence suggests that this role is complex and is often made more difficult because of increasing medication regimen complexities, aspects of the relationship between the caregiver and the care recipient, healthcare system practices and a lack of information and/or training available to the informal caregiver, especially when caring for people living with dementia. Conclusion Responsibility for managing medications for older adults and/or people living with dementia in the community often falls to informal caregivers. More information resources are required for this role, which requires specific medication management skills and knowledge and is further complicated by the cognitive decline of the care recipient.

Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)

“…102 In addition, carers felt that they received inadequate support in planning their relatives' care, that their contribution to managing their relatives' care was not always recognised and that they were often excluded from decision-making. A systematic review 153 investigating the role of informal caregivers of PLWD found that family carers are often expected to manage medication regimens, the complexity of which are increasing. However, health-care systems and structures were often not helpful, for example family caregivers might not be included in communications about medication regimen changes and were not given the information and support that they needed to carry out their medication management roles.…”

“…Seven 72,92,102,125,132,148,162 were qualitative studies, one 107 was a mixed study including a review and a qualitative study, three 93,99,153 were reviews and two 20,94 were questionnaire studies. Three studies 20,94,102 focused on people with dementia and diabetes, two 72,93 focused on those with dementia and VI, one 89 looked at those with dementia and deafness, one 92 focused on those with dementia and cancer, two 148,153 looked at family carers' views on medication management and four 99,107,125,132 looked at the needs of people with dementia in general hospitals. Literature on the experiences of older people with dementia in acute general hospitals has highlighted shortcomings in the care provided, the attitudes and training of staff, and the physical environment and problems with care cultures.…”

Development of a core outcome set for disease modification trials in mild to moderate dementia: a systematic review, patient and public consultation and consensus recommendations

“…Having an informant for each participant would also be useful to ensure that, if the intervention is pharmacological, it is taken in adherence with the protocol, as medication management can be difficult for people with dementia, and often caregivers provide support. 479,480 Informants are also often involved in the completion of outcomes on behalf of the person with dementia they care for. There was discussion around who completes outcomes at both the PPI consultation and consensus conference and, although it is important that people with dementia should be enabled to complete measures, informal carers also need to be involved.…”

Testing Tele‐Savvy: Protocol for a randomized controlled trial

“…While caregiving may provide rewards (Lloyd, Patterson, & Muers, 2014; Roth, Fredman, & Haley, 2015), caregivers’ responsibilities increase over time (Alzheimer’s Association, 2017; Gillespie, Mullan, & Harrison, 2014; Spillman, Wolff, Freedman, & Kasper, 2011), adversely affecting caregivers’ health (Fonareva & Oken, 2014), psychological and social well-being (Schulz & Martire, 2004); and family relationships (Gaugler, Zarit, & Pearlin, 1999; Tremont, Davis, & Bishop, 2006). Although few are trained for this work, caregivers essentially play the role of a clinician and even a healthcare team.…”