Studies of older adults with dementia and their caregivers have shown that very often, the older adult’s desire to be self-sufficient often clashes with the caregiver’s concerns about the individual’s safety. However, researchers have also identified areas of friction among older adults who do not have dementia and their caregivers.
For example, according to one study among older adults who have severe heart disease, these individuals don’t appreciate unwanted or excessive phone contact—or advice they haven’t requested—from family and friends. In another study, older adults with lupus (an autoimmune disease caused when your immune system attacks your own body tissue) said they’d received advice from friends and family that they felt wasn’t well-informed. They also reported they received support that felt “overprotective.”
Noting that we need more understanding of caregiver and care recipient relationships, a research team designed a study using interviews with caregivers and the older adults receiving care. These interviews were designed to explore experiences, attitudes, and preferences about caregiving relationships. The study appeared in the Journal of the American Geriatrics Society.
The researchers recruited older adults from primary-care and specialty clinics and from assisted-living facilities in Connecticut. The care recipients were 65-years-old or older, had more than two chronic conditions, did not have problems thinking or making decisions, and had an unpaid caregiver (relative or friend) who was involved in their health care.
The older adults were first asked to name their chronic conditions, and then to describe how their caregivers helped them manage those conditions. Researchers also learned about the care recipients’ reactions to the assistance they received. Caregivers were invited to respond to their care recipients’ answers, provide their own examples, and discuss how they felt about the assistance they provided.
After the interview, the care recipients completed a questionnaire about age, gender, race, education, marital status, living arrangements, and their relationship to their caregivers. Caregivers completed a separate questionnaire about their age, gender, race, education, marital and employment status, and living arrangements.
The care recipients were around 82-years-old; most were white and female. Caregivers were around 70-years-old, two-thirds were women, and most were either a spouse or an adult child of the person receiving care.
The researchers learned about caregiving activities that were common to most caregiver/care recipient pairs. These included managing medications, coordinating healthcare appointments, managing paid caregivers, and speaking with medical professionals.
Relationships that were “supportive” included these behaviors:
- Agreement about caregiver’s level of involvement. Caregivers were responsive to the care recipient’s desired level of assistance. In visits with healthcare providers, for example, caregivers were mindful of the care recipient’s desire to speak directly to the provider but asked clarifying questions to make sure they understood all the information.
- Mutual understanding. Care recipients tried to be less demanding of caregivers by being “good patients” and following their treatment regimens. Caregivers acknowledged the challenges these individuals faced in managing their health conditions and in losing physical function.
- Making decisions together. Care recipients and caregivers worked together to make treatment decisions that were satisfactory to both parties. The caregiver made sure that the individual’s preferences for care were recognized, and the care recipient made sure that the caregiver’s needs were taken into account.
Relationships with conflicts included these behaviors:
- Disagreement about caregivers’ level of involvement. Some care recipients felt that their caregivers were too involved. In visits with healthcare providers, the individuals felt that, with their caregivers present, their own voices were not getting heard. Caregivers felt that their involvement was necessary to impart accurate information when the care recipients lacked English-language skills or intentionally withheld information from healthcare providers.
- Disagreement about one another’s competency to perform disease management tasks. Some care recipients did not trust their caregivers to administer medications, although caregivers felt equipped to perform this task. Caregivers in these situations also were skeptical of care recipients’ abilities to carry out treatment regimens, manage medications, or communicate adequately with healthcare providers, even though care recipients felt able to perform these activities without assistance.
- Under-appreciation. In “conflict” relationships, care recipients often felt that the caregiver had unrealistic expectations of their abilities to manage their health conditions. Caregivers described their roles as being “the mother of a toddler” or as an “unpaid slave,” stating that the person being cared for did not fully recognize the stress associated with caregiving.
- Disagreement over decision-making and disease management. Some care recipients and caregivers disagreed over decisions about healthcare, including rehabilitation and the day-to-day management of a care recipient’s health conditions (e.g., diet, exercise, number of blood draws, and the use of assistive devices).
While older adults with multiple chronic illnesses and their family caregivers perform a universal set of disease management activities, their preferences for accepting or providing assistance with those activities are highly personal. The researchers said their findings support a family-centered approach to working with these individuals and their caregivers.
This summary is from “Patient and Caregiver Perspectives on Managing Multiple Health Conditions.” It appears online ahead of print in the Journal of the American Geriatrics Society. The study authors are Catherine Riffin, PhD; Peter H. Van Ness, PhD, MPH; Lynne Iannone, MA; and Terri Fried, MD.