Knowing that caregivers are increasing in number and diversity and also in the tasks they need to be prepared to accomplish, what can healthcare providers do assist them?
Categories of Care
Training and support is needed by caregivers to:
- Provide general care for their patients’ ADLs and IADLs
- Provide medical/nursing tasks (M/Ns)
Activities of Daily Living (ADLs)—walking/ambulating, feeding, dressing and grooming, toileting, bathing, and transferring—often seem obvious because we are used to doing these things for ourselves, but there are learned techniques and methods for helping someone else with these activities that can make them easier and safer for both people.
Instrumental Activities of Daily Living (IADLs)—managing finances, managing transportation, shopping and meal prep, housecleaning and home maintenance, managing communication, and managing medications—may also seem obvious, but will also often benefit from new techniques and information.
Assessment of ADLs and IADLs give geriatricians and primary care providers information on how an older person is “functioning,” and difficulties can point to physical or cognitive problems that should be addressed (Kernisan, 2019).
Medical/nursing tasks (M/Ns) represent complex care and can include (in order of frequency): managing medications (82%), helping with mobility assistive devices (51%), preparing food for special diets (48%), wound care (37%), use of meters and monitors (34%), operating durable medical equipment (27%), using incontinence supplies (25%), operating mechanical ventilators or oxygen (11%), other tasks include using telehealth equipment, incontinence equipment such as catheters, or suctioning equipment; administering IV fluids or medications, test kits, or enemas; operating tube feeding equipment or home dialysis equipment; and doing ostomy care (Reinhard et al., 2019).
Caregivers performing M/Ns are frequently performing more than one, with more than 60% performing 3 to 5 tasks. These caregivers are also twice as likely to be assisting with ADLs, handling a greater number of IADLs, and spending more hours caregiving than those who do not perform any M/Ns (Reinhard et al., 2019).
Most family caregivers are performing ADLs and, if not performing all IADLs, are responsible for locating and hiring people who can do them safely, correctly, and in a trustworthy manner. Caregivers may not realize there are safer or more efficient ways to accomplish some of these tasks for another person until something is lost or someone is injured. Providing resources for caregiver education on these tasks is important.
How Caregivers Want to Receive Information
A recent study using focus groups found that caregivers were interested in having more information about what to expect at every stage of their care recipient’s illness and about managing behavioral changes, coexisting medical conditions, and possible complications. Caregivers looked first and foremost to healthcare professionals as the primary source of trusted information (Slaboda et al., 2018).
Caregivers preferred information that came in:
- Peer-to-peer discussion forums
- Fact sheets
- Educational videos (Slaboda et al., 2018)
Despite a wealth of information in these formats available on the internet from organizations such as the Alzheimer’s Association, Family Caregiver Alliance, AARP, and others, more than half of the study members did not use online tools. More research is needed to understand why desired materials are available online yet so many people do not use them (Slaboda et al., 2018).
In the meantime, healthcare providers, knowing they are considered a trusted resource, can prepare themselves to help caregivers connect with online resources, or help them locate good alternatives if computers and internet access are barriers to use. Local hospitals, senior centers, community colleges, and libraries may have printed material, regular visiting experts, workshops, classes or seminars, and may facilitate support groups.
Online research can arm you with resources you feel most comfortable recommending and that complement the needs of your position and practice. Keep in mind that too much information can be overwhelming and if a person is unsure about the accuracy or reliability of material they may lose out on useful information; directing caregivers to resources you are familiar with and have confidence in can help them focus. Remind them to keep track of their questions and use those to expand your resource collection and inform future practice.
Organizations such as AARP, the Family Caregiver’s Alliance, and the Alzheimer’s Association are some of many sources of information (see Resources). Each organization lays out their material differently and may be appealing to different users. Printer-friendly versions, mailed copies, or material in other languages are often available.
The Alzheimer’s Association has online information for professionals on assessment, diagnosis, management, and care planning, as well as information professionals can refer patients and caregivers to on what to expect at each stage of the disease—improving communication, relevant legal and financial planning, driving issues, understanding and responding to dementia-related behavior, modifying activities, daily planning, safety, planning for costs, and the choice in residential facilities. In addition to online training and materials, they provide links to local chapters and online and in-person support groups (AlzA, 2019c).
Family Caregiver Alliance has an online Learning Center with materials to read—online or print out; watch webinars, videos, slide shows; listen to meditations or teleconferences. They also offer some state-specific information on getting help, links to events in certain areas, and online classes (FCA, n.d.).
Support for Caregiving Tasks
Healthcare providers can work with caregivers to establish a care plan utilizing the Complete Care Plan form available from the CDC (in English and Spanish), or a similar form that helps the caregiver gather information about:
- Health conditions
- Healthcare providers
- Emergency contacts
- Caregiver resources
Emphasize the benefits to both caregiver and care recipient of keeping an up-to-date plan. Suggest to caregivers that having a system for recording information, whether paper or digital, is important for keeping information current, for themselves, for healthcare providers, and others who may be called upon to step in to help with care. Systems may use paper in notebooks or binders, Word or Excel documents, online programs, or even phone apps, but resources and support discussions suggest that the system that is going to work best is the one a caregiver is adept at using and will keep up to date.
ADLs and IADLs
Some ADLs and IADLs may be straightforward for a caregiver to begin handling. Shopping for food and meal preparation or arranging transportation to appointments are generally similar to what we do for ourselves and simply a matter of learning details relevant to the patient. Other activities like bathing, dressing, and transferring are not the same as doing those things for oneself and require learning some new skills. Techniques for managing ADLs for another person are particularly amenable to educational videos—one of the preferred methods of learning identified by caregivers.
Helping another person to move from or to a bed, chair, or toilet can be dangerous if not done properly—an important concept to convey to caregivers. The video below on transfer skills, created by the Family Caregiver Alliance, is a good example of how new skills can be learned relatively easily at home, and a video is always there to be watched again.
Other videos in the Caregiver College Video Series reflect a mix of ADLs and IADLs and include Nutrition, Dental Care, Bathing and Dressing, Toileting & Incontinence, Behavioral Issues, and Self-Care.
Another video library is available from the Home Alone Alliance’s Family Caregiving How-To Video Series (Reinhart et al., 2019), which includes multiple videos in the categories of Special Diets, Managing Incontinence, Wound Care, Mobility, and Managing Medications. Subtopics are covered in collateral videos and guides in PDF format are available along with fill-in forms that can be downloaded and used by caregivers.
Sometimes topics related to ADLs and IADLs are particularly sensitive and hard for caregivers and care recipients to discuss, especially if the caregiver is a spouse or child. One of these topics is driving—and how to convince someone to stop driving. Approaches that emphasize dignity and respect and tap into important values held by the care recipient can be effective as this video demonstrates.
As the needs of the care recipient increase, caregivers feel more stress as they worry that they do not know how to do something, are not doing it correctly, or will do something to cause pain or suffering to their loved one (Reinhard et al., 2019). When helping with ADLs and IADLs morphs into helping with more complex medical/nursing tasks, caregiver stress usually increases.
Medical/Nursing Tasks (M/Ns)
The most common medical/nursing task that caregivers perform is medication management (as identified by 82% of participants in a recent study). Just over half of them noted they had to do it more than once a day and slightly more than one-quarter of them considered it hard to do (Reinhard et al., 2019).
Depending on the source, medication management is considered with IADLs or with M/Ns, reflecting how it comes to be part of a person’s daily routine and how it can vary from a simple need to take a pill or two once or twice a day, to a very complex undertaking involving multiple medications multiple times a day that may include pills, liquids, drops, patches, sprays, ointments injections, and suppositories.
Medication management involves a complex of skills to keep track of what is being taken and when it changes; manage refills; see that medications are dispensed on time, not forgotten, and taken correctly; follow safety practices so that a patient with cognitive deficits cannot access medications; and know how to deal with patient resistance to medications. It also means being aware of potential side effects, knowing what to do about them, and how to spot them in a patient with dementia who may not be able to communicate well.
Several websites offer videos, fill-in forms, and guides for handling medication management, including dealing with resistance by patients with dementia. These include Home Alone Alliance and Next Step in Care (see Resources).
Other M/N tasks commonly performed by at least 25% of caregivers include help with assistive devices for mobility, preparing special diets, wound care, using meters/monitors, operating durable medical equipment, and using incontinence supplies such as disposable briefs. Except for wound care, 27% to 54% of caregivers do these tasks more than once a day and one-third to one-half of caregivers identify them as hard to do (Reinhard et al., 2019).
More than one-quarter (27.5%) of caregivers identify tasks as difficult because they are afraid of making a mistake. This fear is highest for managing medications, using meters and monitors, and performing wound care. The constant attention needed for tasks like special diets and medication management and the fear of hurting the care recipient factors into wound care, mobility, and the use of durable medical equipment (Reinhard et al., 2019).
Managing incontinence with disposable briefs is cited as the most emotionally challenging with one-third of caregivers noting embarrassment for the care recipient and 20% finding the task emotionally difficult for themselves (Reinhard et al., 2019).
As noted earlier, good video libraries for learning or perfecting techniques for many common caregiving tasks are available online. Videos that address incontinence, for example, do so with compassion and treat the problem broadly to help a caregiver think about the situation ahead of time, be prepared, and know when explanations may not be the obvious.
Ask caregivers what tasks they are performing and whether they feel comfortable doing so. If their loved one was recently discharged from the hospital, find out how much training the caregiver received and if the patient qualifies for Medicare home health, which can be another source of instruction.
Special consideration should be given to pain management, which is a high-stress task. Seventy percent of family caregivers handling M/N tasks are faced with managing pain or discomfort for their care recipient and 80% rate pain management as stressful. Pain management is a full-attention task with many variables. Maintaining control and knowing what is too little or too much can be highly stressful, with men reporting more difficulties and worry about pain medications than did women (Reinhard et al., 2019).
Medical/Nursing Tasks and the CARE Act
More and more, caregivers are finding themselves responsible for medical or nursing tasks when a loved one is discharged from the hospital and often they do not know how to do these things, may not understand the instructions, or may not receive any instruction. Introduced to state legislatures by AARP in 2014, the Caregiver Advise, Record, Enable (CARE) Act is now law in 40 states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands. As of 2019 it is also under consideration in Wisconsin. The CARE Act requires hospitals to:
- Ask each patient if he or she wishes to name a family caregiver.
- Record the name of the family caregiver on the patient’s medical record and inform the caregiver when the patient is being discharged.
- Provide the caregiver with education and instruction on the medical or nursing asks that will need to be performed at home. (AARP, 2019)
The CARE Act is intended to help caregivers to finally be recognized as “part of a patient’s overall health team” (AARP, 2019). However, the report Home Alone Revisited: Family Caregivers Providing Complex Care released in April 2019 makes it clear that much still needs to be done. The study’s five Major Findings provide some followup on the CARE Act and are illuminating:
- Today’s caregivers provide intense and complex care, including medical/nursing tasks and managing multiple health conditions that are often accompanied by pain.
- Today’s caregivers are diverse and so are their experiences.
- Caregivers who are socially isolated or have no choice about caregiving are more at risk for experiencing difficulties with complex care.
- Caregivers performing more medical/nursing tasks experience both positive and negative impacts.
- Many family caregivers are still on their own—health systems should do more to prepare these vital members of the team. (Reinhard et al, 2019)
The Next Step in Care website has materials including a toolkit that are especially directed toward hospital-based providers who are working with or want to work with family caregivers (see Resources).
Caregivers and the RAISE Family Caregivers Act
The RAISE Family Caregivers Act (Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2017,) which became law on Jan. 22, 2018, directs the Secretary of Health and Human Services to develop a national family caregiving strategy. The strategy will identify actions that communities, providers, government, and others are taking and may take to recognize and support family caregivers, and will include:
- Promoting greater adoption of person- and family-centered care in all healthcare and long-term service and support settings, with the person and the family caregiver at the center of care teams
- Assessment and service planning (including care transitions and coordination) involving care recipients and family caregivers
- Information, education, training supports, referral, and care coordination
- Respite options
- Financial security and workplace issues (ACL, 2019)
The advisory council mandated to provide recommendations to the HHS Secretary has 15 members representing the diversity of stakeholders in family caregiving, including caregivers, healthcare and social service providers, and older adults using long-term services and supports. Background on all council members, meeting agendas and summaries, and livestream recordings of council meetings are available online (ACL, 2019, 2019a).