Thirty percent of persons with multiple sclerosis (pwMS) require caregiving owing to their disability, and 80% of care to pwMS is provided by informal unpaid caregivers. The average caregiver is male, in a spousal/partner relationship with the pwMS, and provides more than 4 hours per day of care for many years. The physical, emotional, and time-intensive nature of caregiving for pwMS frequently impairs the caregiver’s own physical and emotional health. Rehabilitation medicine professionals should be aware of the high risk of caregiver burden. Assessment of caregiver needs and appropriate intervention will help minimize the burden on caregivers.
Key points
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Thirty percent of persons with multiple sclerosis (MS) require care because of their disability.
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Eighty percent of MS care is provided by unpaid caregivers.
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Caregiving tasks are time intensive.
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Caregiver burden is common.
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Interventions can reduce caregiver burden and improve caregiver and patient health.
Introduction
More than 44 million persons in the United States provide informal, unpaid care to their relatives and friends. The value of this informal caregiving is estimated at $375 billion, or twice the cost of formal home care and nursing home care.
Thirty percent of persons with multiple sclerosis (pwMS) require caregiving owing to disability. More than 80% of this care is provided by informal caregivers.
Benefits of Informal Caregiving
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Patient remains in own home and community
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Patient avoids institutionalization
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Patient has familiar caregiver(s)
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Reduced cost to health care system
Caregiver Burden
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Strain on mental and physical health of caregiver
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Loss of employment income due to time demands of caregiving
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Caregiver may lack appropriate training and knowledge
Introduction
More than 44 million persons in the United States provide informal, unpaid care to their relatives and friends. The value of this informal caregiving is estimated at $375 billion, or twice the cost of formal home care and nursing home care.
Thirty percent of persons with multiple sclerosis (pwMS) require caregiving owing to disability. More than 80% of this care is provided by informal caregivers.
Benefits of Informal Caregiving
- •
Patient remains in own home and community
- •
Patient avoids institutionalization
- •
Patient has familiar caregiver(s)
- •
Reduced cost to health care system
Caregiver Burden
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Strain on mental and physical health of caregiver
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Loss of employment income due to time demands of caregiving
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Caregiver may lack appropriate training and knowledge
Comparison of caregiving for adults with multiple sclerosis and caregiving for other adults
The average adult cared for at home is elderly, and disabled by arthritis, stroke, dementia, or other diseases that tend to occur later in life. By contrast, patients with multiple sclerosis (MS) who require care are young or middle-aged adults. The normal life span is not greatly shortened in MS patients, so impaired function has an earlier onset and longer duration than is found in most other disabled adults. The relapsing, remitting course of the most common form of MS adds uncertainty and complicates care planning ( Table 1 ).
| Caregiver Characteristics | MS Adult | Other Disabled Adult |
|---|---|---|
| Gender | 47% female | 65% female |
| 53% male | 35% male | |
| Age (y) | 60 | 50 |
| Caucasian | 90% | 73% |
| Live with care recipient | 91% | 24% |
| Spouse/partner of care recipient | 62%–78% | 20% |
| Care duties require time taken off work | 77% | 57% |
| Duration of care provided (y) | 13 | 4 |
Economics of MS caregiving
The average value of unpaid caregiving to those with significant disability is an estimated €23,681 (US$30,517) per year. Informal caregiving allows pwMS to avoid institutionalization and to remain in their own home and neighborhoods. More than 40% of pwMS who require care have an annual income of less than $25,000.
Caregiving for a pwMS with an Expanded Disability Status Scale (EDSS) score of 6 to 7 (cane required) ranges from 1.4 to nearly 2 hours per day. Once a patient can no longer ambulate with a cane, the caregiver burden increases dramatically. Care for a pwMS with an EDSS score of 8 to 9 requires 1.7 to 8 hours or more per day. Time spent caregiving for similarly disabled MS patients was reported as the same whether or not the caregiver was in a spousal relationship with the recipient.
Characteristics of MS caregiving tasks
The variation in task nomenclature between studies limits one’s ability to generalize study findings. For example, toileting help may be categorized as personal care, mobility assistance, or activities of daily living (ADLs), depending on the model ( Table 2 ).
| Caregiver Tasks | MS Care Recipients (%) |
|---|---|
| Meals | 50 |
| Hygiene/toileting | 45–55 |
| Dressing | 69 |
| Ambulation inside the house, transfers | 74 |
| Ambulation outside the home | 91 |
| ADL caregiving needs | 70 |
Carton and colleagues use 4 categories:
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Mobility assistance (transfers, pushing a manual wheelchair, using the toilet)
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Nursing care (giving injections, managing catheter equipment)
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Company (social activities)
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Other (care coordination, gardening)
O’Hara and colleagues identified 5 major life domains in the care needs of pwMS:
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Personal care (dressing, hygiene, toileting)
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Mobility (ambulation, transfers)
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Household tasks (laundry, cooking)
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Leisure (hobbies, social activities)
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Employment (paid occupation)
Pakenham classified MS caregiving tasks into 4 categories:
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ADLs (toileting, feeding, dressing)
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Instrumental ADLs (shopping, transportation, housework)
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Psychoemotional (management of fatigue, dealing with cognitive difficulties)
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Sociopractical (managing finances, assisting with exercise).
Tasks such as transfers, in-home ambulation, and toileting may not take up much time per occurrence, but frequency results in significant total time.
Caregiver burden
Caregiving burden may be objective (the visible and easily quantifiable demands on caregiver time) or subjective (the emotional strain as perceived by the caregiver). More than 20% of MS caregivers experience caregiver burden. Moreover, caregiver burden may be underreported.
Caregiver burden is mediated by:
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Disease severity
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Presence or absence of formal and informal support networks
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Participation in respite and other non-caregiver activities
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Presence of other or conflicting roles
Problem Areas Reported by Caregivers
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Physical strain of caring for mobility-impaired patients
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Constant unrelenting nature of care needs
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Sleep interruptions due to caregiving tasks
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Quality of relationship with pwMS
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Restrictions from caregiving
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Lack of knowledge about MS
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Lack of necessary assistive equipment
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Own aging and own health problems
The negative impact of caregiving may cause physical, mental, social, and financial strain. The unpredictable nature of MS may exacerbate caregiver stress.
Increased caregiver stress has been associated with increased time spent on caregiving. However, increased time and duration of caregiving has also been found to be associated with increased caregiver satisfaction and benefit finding.
At-home respite services are used by only 5% of MS caregivers. Adult daycare services are used by only 3.6%. It is not clear whether lack of use is due to lack of awareness, rejection of outside help, or lack of access to services owing to financial or geographic limitations.
Subjective caregiver stress does not relate to degree of caregiver self-efficacy. Studies on gender in relation to subject caregiver stress have contradictory findings. However, female caregivers report increased objective caregiver burden in comparison with male caregivers.
Caregiving has an adverse effect on the ability of caregivers to continue paid employment.
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Fifty-one percent reduced their employment hours as a result of caregiver responsibilities within the last year.
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Thirty-six percent expected to reduce their employment hours during the next year.
Caregiving may have a negative impact on the health of the caregiver ( Table 3 ).
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