Caregivers are often considered the “backbone of eldercare” [i], yet they are often unpaid, untrained, under-supported, and overwhelmed. When a person’s functional status declines and they need assistance to perform their activities of daily living, a carer or caregiver is the person from their family or network that steps in to help. A carer can be paid or unpaid, and they help address impairments from a disease, mental disorder, or old age.
According to a report in 2016 by the National Academies of Science, Engineering, and Medicine (NASEM), “At least 17.7 million individuals in the United States are family caregivers of someone age 65 and older who has a significant impairment.”[ii] Due to the responsibilities, demands, and time constraints that are placed upon a caregiver, it stands to reason that their other relationships, employment, finances, health, and overall quality of life may suffer.
Occupational therapists (OTs) aim to assist their patients with maximizing their independence in daily activities, as well as to consider preventative interventions, adaptations, and compensations in order to maintain their patients’ wellness and wellbeing. However, while attending to our patients’ needs, it is important to also consider the needs and wellbeing of our patients’ caregivers.
According to the NASEM report, 32 percent of caregivers are older adults themselves, and only one out of three reported that they have been asked what supports they need by a healthcare provider. As a homecare occupational therapist who primarily sees seniors, I consider caregiver interviews to be an important part of an evaluation process, and I often find that when discussing both patient and caregiver needs I uncover not one but two potential patients within the same household!
For example, when discussing a new patient’s current level of support needed to complete a transfer, the spouse of a patient will explain that their own “shoulder was pulled a month ago while trying to help with a bed transfer”, and now their “back has been out-of-whack ever since.”
“Have you seen a doctor about this,” I ask. Usually, they haven’t, replying that they don’t have the time or the capacity to think about themselves. With a little coaxing from me regarding the importance of attending to their own needs and self-care, they are inspired to when they realize that they can qualify for in-home rehabilitation from me as well.
Other times, I will reach out to a healthcare proxy, usually the adult child of a patient who lives out of town, to discuss the findings of my evaluation. Issues I address include equipment or adaptation recommendations, as well as general household safety and cleanliness recommendations. Because the focus has often been on the patient I was referred to, the proxy is sometimes unaware that their other parent may also benefit from therapy, and it isn’t long before I can hear the relief over the phone akin to, “Mom has been caring for dad and managing the house for years, but I had no idea that she wasn’t able to do the laundry anymore because of arthritis in her hands. I am so glad that you told me about this. I will figure out a way to get the laundry picked up and delivered, but do you think you could help her with strengthening her hands and her ability to grasp and carry?”
Identifying Future Caregivers and Preempting Stress and Confusion
Often by the time a caregiver recognizes the need for support services, they’ve reached the point of burnout and there is insufficient time to properly plan and procure adequate services that would attend to the physical, psychosocial, and functional needs of both the patient and the person doing the caregiving. As always, I like to emphasize preventative care, and I think that assisting patients and their caregivers in avoiding this all-too-common scenario is one more way OTs can make an enormous impact. Occupational therapists can preempt this unsettling experience by assisting patients and their families with identifying a patient’s caregiver earlier on, assessing the caregiver’s capacity to provide care, and educating and providing supports before care is needed.
There’s a body of research [iii] identifying those most likely to be caregivers by gender, age, and even birth order. Based on research findings, an occupational therapist can begin the conversation with a patient and their family early on to identify the most likely future caregiver, and in turn reduce family confusion, stress, and burnout.
Once caregivers have been identified, occupational therapists can assess their capacities and level of resilience to take on the role. Furthermore, the possible necessary supports can be explored as a part of the design, planning, and implementation of patient long-term care, long before it is needed.
Care Planning Tools for Caregivers and Patients
Patients may have difficulties communicating with their caregivers due to decreased memory, cognition, or even general discomfort when approaching sensitive topics, and this can delay the design and planning of long-term care. Also, sometimes it is difficult for family members, caregivers, and even the patients themselves to fully understand the changing levels of support needed from day to day, causing frustration and confusion in everyone involved.
Occupational therapists can educate patients and caregivers regarding the use of care planning tools such as the card games made by THE CARDS I’VE BEEN DEALT™[iv]. This card game is designed to assist patients and their families with insightful and even fun discussions regarding the identification of a patient’s wishes and values, positive life practices, and interest in daily activities and level of support desired. THE CARDS I’VE BEEN DEALT™ has three card decks called “Wishes and Values,” “Life Practices,” and “Daily Activities,” and they can be purchased separately or as a three-deck set. Some cards are open-ended discussion starters, others are insightful and declarative. All the cards can aid in self-discovery, understanding a patient’s points of concern, and enabling confidence and meaning in the patient/caregiver relationship. Patients are directly involved in the sorting and identification of personally relevant cards, thus fostering personalized, patient-centered discussion. Examples of cards include:
- “I wish my family would listen when I tell them__” (Wishes and Values)
- “I have an end-of-life plan and have communicated it to others” (Life Practices)
- “Remember to Take Medications and Prepare Them Accurately: Open the Bottles, Fill My Pill Box, Crush Pills (if necessary)” (Daily Activities)
OTs and Caregivers As Equal Partners in Successful Transitions
Early identification of a caregiver, assessment of the caregiver, a thorough understanding of the wishes and needs of a patient, and the design and planning of care can assist in reducing caregiver stress. However, it is also important for OTs to understand that other caregiver stressors can continue to occur over the course of patient care. Stress often occurs during times of transition. Transitions due to a decreased level of function, such as the implementation of a new device, like a Hoyer lift, can change patient involvement and affect perceptions of function and independence, stressing out both the patient and the caregivers. Staff and caregiver transitions can affect relationship dynamics between a patient and their support system. Lastly, the transitioning of a patient’s environment or residence can affect everyone involved.
A common transition that is considered stressful for both patients and caregivers is the transition from acute care to a skilled nursing facility (SNF) or home environment. An unsuccessful transition between these environments can result in a risk of hospital re-admission, adverse medication events, a risk of functional decline, and general dissatisfaction for the patient as well as the care team.
A 2017 qualitative study published in Patient Preference and Adherence [v] used caregiver, patient, and healthcare professional interviews to identify four roles of caregivers during times of transition from acute to SNF care. These roles included:
- being an active care provide
- navigating the healthcare system
“Watching” referred to the importance of caregivers being a “second pair of eyes and ears” during the transition. Patients may feel overwhelmed, may have short-term memory problems, or may be medically unable to fully attend to all the medication changes, contraindications, and new devices that the transition may require. Having their caregiver present to monitor the implementation of changes and prevent mistakes is crucial to a successful transition.
The study also considered how caregivers would often adopt and carry over tasks of nursing or rehabilitation staff. Such tasks included, but were not limited to, assisting with feeding, giving medication, and supporting the patients with out of bed transfers when the staff were overwhelmed or unavailable to meet patient needs immediately. Caregiver advocacy helped clinical staff to better understand patient preferences resulting in less risk of harm and discomfort. Often the caregivers would assist the patient in navigating the health care system by asking questions, researching or scheduling various services, thus better coordinating patient care during the transition.
The patients, caregivers and healthcare professionals all gratefully acknowledged and were not surprised by the indispensable roles that caregivers have in times of transition. However, as this study discussed, healthcare providers rarely discuss the needs, willingness and capability of a caregiver to plan and implement these roles before a transition – and even more rarely – during the transitional continuum of patient care. Instead, it is the caregivers themselves who actively decide to take the responsibility and assume the roles, in a sense “filling in” where they are needed, as is needed. The study discussed how it is imperative for healthcare practitioners to consider caregivers as equals during the transition process. In doing so, practitioners must facilitate conversations regarding meaningful and active participation needs of both the patient as well as the caregiver, and that an information exchange between caregivers and care providers should happen throughout the process of patient care.
Facilitators, Barriers, and Recommendations for Caregiver Support
A study, published in 2017 in the Canadian Geriatrics Journal [vi], considered the input of 120 various caregivers, healthcare providers, researchers, government policymakers and community organization leaders. Feedback given was about the facilitation of and barriers to positive caregiver outcomes who are responsible for seniors with complex medical needs.
Through discussion, the study group identified the following as facilitators of positive caregiver outcomes:
- community resources
- available and supportive healthcare providers
- acknowledgment within the system of the role of caregivers
Decreased caregiver knowledge of policies and healthcare systems, decreased knowledge of and access to financial and other resources, decreased knowledge of the levels of support needed by both patients and caregivers, and decreased ability to either access or understand those supports (due to language barriers or technological barriers) – were all identified as barriers to caregiver outcomes.
The study group considered recommendations for further research which included preparing future next-generation caregivers, assisting caregivers in self-identifying their needs and seeking support, and formalizing and centralizing those supports.
Here in America, the Eldercare Workforce Alliance and NASEM published policy recommendations to facilitate positive caregiver outcomes and support. Among them is The RAISE Family Caregivers Act which aims for the development of specific actions for private and public stakeholders to take in order to support family caregivers.
The Eldercare Workforce Alliance and NASEM also advocate for increased funding for various support programs such as The Geriatrics Workforce Enhancement Program, which aims to utilize grants to integrate primary care with community engagement by providing family caregivers with evidenced-based strategies and education.
The NASEM report noted that the population of people aged 65 and older will increase by 41 percent between 2012 and 2030, and thus implicitly the amount and burden of patient care will naturally increase as well. Occupational therapists must consider this an opportunity to expand our scope of care beyond the needs of our patients, and to consider the needs, education, and support of caregivers as well.
[i] “Family Caregivers: The Backbone of Our Eldercare System.” Family Caregivers: The Backbone Of Our Eldercare System > Issue Briefs > Research > Eldercare Workforce Alliance, Eldercare Workforce Alliance, 2017, eldercareworkforce.org/research/issue-briefs/research:04-14-2017-family-caregivers-the-backbone-of-our-eldercare-system/.
[ii] National Academies of Sciences, Engineering, and Medicine. 2016. Families caring for an aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
[iii] “Women and Caregiving: Facts and Figures.” Family Caregiver Alliance, National Center on Caregiving, 31 Dec. 2003, Updated February 2015, www.caregiver.org/women-and-caregiving-facts-and-figures.
[v] Jeffs, Lianne et al. “The Role of Caregivers in Interfacility Care Transitions: A Qualitative Study.” Patient preference and adherence 11 (2017): 1443–1450. PMC. Web. 13 Oct. 2017.
[vi] Charles, Lesley, et al. “Understanding How to Support Family Caregivers of Seniors with Complex Needs.” Canadian Geriatrics Journal, vol. 20, no. 2, June 2017, pp. 75-84. EBSCOhost, doi:10.5770/cgj.20.252.