Many neurological disorders like traumatic brain injury (TBI), dementia and Parkinson’s disease, are associated with chronic impairment in physical and mental dependence and activities of daily living. The level of dependence and need for care depends upon the diagnosis, severity of the condition and presence of behavioral or psychiatric issues. A concept in the scientific literature, caregiver burden, is used to describe a number of factors associated with the caregiving experience, stress and possibly burnout. This is an important concept to understand, especially for those providing care to older adults diagnosed with neurological disorders.
Caregiver Snapshot
In the United States and around the world, care is typically provided at the care-recipient’s home and the caregiver’s home. The caregiver is usually a female family member like a wife, daughter, daughter-in-law, partner, sibling or a more distant relative. Care will be provided in the home as long as it’s manageable, but once caregiver burden becomes overwhelming, the family may decide to look for care outside of the home, including assisted living communities and skilled nursing centers.
Common Neurological Diagnoses
Caring for older adults with neurological disorders most commonly includes the following:
- Dementing illness caused by neurodegeneration, stroke, vascular conditions, metabolic disorders, toxic substances or medication
- Parkinson’s disease and atypical parkinsonian syndromes
- Neuromuscular conditions like muscular dystrophy and ALS
- Brain disorders including epilepsy, traumatic brain injury, and migraines
- Malignant brain tumors and motor neuron disease
- Chronic pain and neuropathic pain
Providing care in the home can be a challenging and stressful experience for the caregiver, especially as the health condition worsens and the physical and mental status of the care-recipient deteriorates. Many factors make caregiving difficult and increase risk of caregiver burden including care-recipient features such as:
- Being male
- Advanced age
- Severity of condition
- Comorbidities
- Behavioral or psychiatric issues
- Motor impairment
- Intellectual or cognitive difficulties
- Impairments in speech and communication
Any combination of these features can increase risk for caregiver stress, burnout and high levels of caregiver burden.
Features of Caregiver Burden
The word “burden” is not meant to connote negativity, as in “He’s such a burden to care for”, but rather is a concept that attempts to capture aspects and consequences of care and is generally scored on a range from mild, to moderate, to severe caregiving burden. The higher the burden, the greater risk for caregiver physical and mental health problems. Besides features of the care-recipient placing greater risk of burden on the caregiver, personal and occupational issues may be involved in burden as well, including:
- Support from family
- Time for breaks in caregiving schedule
- Time for personal needs (leisure, recreation, social contacts)
- Lack of appreciation
- Poor finances or low income
- Lack of education about the disorder
Final Thoughts on Caring for Older Adults with Neurological Conditions
Caring for someone with a neurological condition can be very challenging and stressful. As the disorder progresses and the care-recipient becomes more dependent, caregiving can lead to physical and emotional burnout as well as a higher risk of caregiver burden. Many caregivers pay so much attention to the person they are caring for that they forget to take care of themselves and as a consequence, may suffer from numerous negative physical and mental health outcomes. Learning about the care-recipient’s condition, stress management, self-care and how to reduce risk of burnout can pay big dividends for the caregiver in the end.