Caregiving Gaps Confirm that Family Caregivers May Benefit from Support

Do family care receivers experience gaps in the quality of care provided by family caregivers? A common belief is that family caregivers are the best caregivers.

Perceptions exist that the relationship between the family caregiver and the family care receiver is of better quality than a relationship with an agency caregiver. Family caregivers are devoted, committed, and responsive to the needs of family care receivers.

Family caregivers are also overwhelmed, burdened, stressed, unhealthy, guilty, angry, and do not prioritize caring for themselves. The emotional effects of caregiving and a long list of physical tasks places family caregiver in a position of feeling burdened by caregiving responsibilities.

Does caregiver burden result in gaps in care quality?  Why don’t family caregivers get the help they need?

Considering the high levels of caregiver burden and stress, should surprise exist that family caregivers make mistakes or that caregiving gaps happen? A study examining factors associated with unmet care needs of older adults identified that 31.8% of older adults needing help reported at least one adverse consequence. These included wet or soiled clothing due to incontinence, being housebound, having limited mobility inside the home, or medication errors.¹

Family care receivers benefit from assistance with activities of daily living that include assistance with bathing, dressing, eating, feeding and related assistance, toileting, and mobility and transfers. Assistance is also needed with other activities, called instrumental activities of daily living, like taking medications, dialing the telephone, grocery shopping, and paying bills.

The most common concerns reported by family care receivers were medication mistakes, incontinence resulting in wet or soiled clothing, and limited mobility inside the house including safe transfers to avoid falls. These caregiving gaps occur more frequently with older adults requiring more physical care and hands-on assistance for activities of daily living. Care recipients with memory loss or Alzheimer’s Disease also require a higher level of care.

Caregiving Gap #1 Avoiding Medication Mistakes

The ability to manage and refill medications is the first caregiving gap. Care receivers with several chronic conditions or a diagnosis of memory loss take more medications. This increases the likelihood of medication errors, meaning medications taken at the wrong time, taking the wrong dosage, or not taking the medication at all.  

Medication reminder boxes, available at the store, usually in the pharmacy section, may be a support to help family caregivers better organize medications. These medication reminders are marked with the day of the week and time of day. The markings and transparency of the boxes make it easy to visually see if medications were taken. Visual slots for time of day may help ensure that medications are taken at the right time. Pharmacists are also willing to assist in discussing the time of day that medications should be taken if questions exist.

Caregiving Gap #2 Managing Incontinence and Personal Care

Embarrassment by family care recipients about personal care issues that include toileting and bathing is common. Older adult parents feel self-conscious and ashamed that they are no longer able to bathe by themselves or use the toilet independently. Mobility concerns and fear of falling result in accidents due to the care recipient not making it to the bathroom in time.

Incontinence is one of the main reasons that family care recipients are placed into nursing homes. Washing bedding or changing soiled clothing can become a several-times-a-day activity. Family caregivers dislike changing adult diapers.

Skin breakdown and urinary tract infections become a concern. Frequent urinary tract infections result in mental confusion, delirium, and hospitalizations. Poor hygiene is a factor in care neglect and concern of family caregivers who might be cited for neglect if frequent hospitalizations occur.  

Special training or support may be beneficial for family caregivers for bathing assistance and continence care. Safety equipment for the bathroom like grab bars, raised toilet seats, or shower chairs may relieve the stress of providing incontinence and personal care. If possible, create a schedule to use the toilet every two hours to eliminate accidents. The use of a urinal for men or a bedside commode for women that may be placed anywhere in the home may also be a solution.

Caregiving Gap #3 Therapies and Equipment Supports Safe Mobility and Transfers

Family care recipients with arthritis, orthopedic concerns, prior fractures, or those who have experienced falls are hesitant to stand from a bed, transfer from a chair into a wheelchair, or walk independently. Fear limits mobility, increases physical weakness and results in feelings of isolation. No one wants to be limited to sitting in a chair or sitting or lying in bed all day.

As with bathroom safety, many supports exist to support physical transfers and mobility. These include bed canes, bed-assist handles, bed ladders, leg lifter straps, floor-to-ceiling poles, walkers, walking canes, transfer chairs, and wheelchairs. Local medical equipment stores have many of these products for viewing or they can be purchased online.

The challenge for family caregivers is physical strength, use of proper transferring or lifting techniques, and the physical disability or bodyweight of the family care recipient. Concerns exist for injury of both the family caregiver and family care recipient if a fall were to occur.

In-home physical therapy provides daily exercises to support strength. Occupational therapy provides examples and tips for dressing, bathing, toileting, and other daily activities. Training on the use of a gait belt may be helpful for family caregivers. Gait belts provide additional assistance with physical transfers and mobility.

When possible, physical and occupational therapy paid for by health insurance should be accessed. A physician visit and order are required for insurance payment. Improving physical strength and learning safety techniques are beneficial to avoid falls. Gaining confidence with physical abilities may eliminate the caregiving gap reported by family care recipients in feeling that they are chair, bed, or even home-bound.   

For all caregiving gaps, a discussion is important to problem solve solutions and identify concerns. Family caregivers are under great stress. Family care recipients may feel like a burden.

Open communication about solutions is the path to ensuring that quality care is provided and received. The time may come to discuss hiring an outside caregiving agency to provide a break for the family caregiver.

An outside caregiving agency may also provide a new face and opportunity for socialization for the family care recipient. Many families use this type of support which becomes a win-win situation for all involved. Making plans for aging parents is also important so that decisions are not made in crises.

Source: 1. Scott R. Beach and Richard Schulz. Family Caregiver Factors Associated with Unmet Needs for Care of Older Adults. JAGS 65:560-566, 2017.

© 2018, 2-21 Pamela D. Wilson, All Rights Reserved.

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