A caregiver is someone who provides assistance to a person in need. Care can be physical, financial, or emotional. Caregivers help with basic activities of daily living such as bathing, dressing, walking, and cooking, or with more complex tasks such as medication and home management. A caregiver may provide direct care or manage care from a distance and can be a family member, a neighbor, a friend, or a professional.
The onset of caring tends to emerge naturally from customary family transactions that existed before the onset of dementia. The need for care escalates over time, from support for household, financial, and social activities, to personal care, to almost constant supervision and surveillance. Important transitions include the involvement of professional caregivers, institutionalization, and bereavement (ADI, 2013, latest available).
Causes of Stress for the Caregiver
Caring is an important, if often undervalued, role that comes with high levels of stress and anxiety, and much more needs to be done to make sure that caregivers are able to carry their duties without sacrificing their financial, social, and mental wellbeing. Stress is also a common factor with paid health and long-term care professionals. In an Alzheimer’s Disease International survey, almost half of respondents said they felt stressed or under pressure some of the time while 37% said they felt stressed often or all of the time (Gautier et al., 2022).
Caregivers of people with dementia invest significant time, energy, and money over a long period of time. Poor self-rated health and lower levels of life satisfaction are reported by many caregivers. Caregivers' cumulative stress is associated with increased nursing home placement of the patient with dementia (Lykens et al., 2014). On average, caregivers caring for a person with dementia spend 14 hours per week assisting with basic ADLs and up to 43 hours per week when more complex assistance and supervision are needed.
The economic impact of caregiving is an additional stressor for caregivers. For caregivers of older people (not dementia caregivers specifically) a 1% increase in hours of care is associated with a reduction in the employment rate of caregivers by around 10%. In a survey of American caregivers, 13% had to go from working full- to part-time, 11% had to take a less demanding job, and 11% had to give up work entirely. Cutting back or giving up on work increases caregiver strain, while hiring a paid caregiver or having additional informal support can reduce caregiver strain (ADI, 2013).
High levels of emotional stress can lead to denial, anger, and contribute to social withdrawal. Caregivers, overwhelmed by the demands of caring for someone with dementia can experience irritability, anxiety, and sleep disturbances. Many studies have documented depressive symptoms among caregivers, with the highest prevalence among those caring for someone with dementia (ADI, 2013).
The amount of stress experienced by caregivers is associated with caregiver demographics, personality, and their perception of their role as a caregiver, their coping strategies, and relationships they have outside of their caregiving role.
Factors and Characteristics Associated with Caregiver Strain
Characteristics associated with caregiver strain
Perception and experience of caregiving role
Managing Caregiver Stress
It is possible to reduce caregiver stress with education, training, support, and respite care. These four components have been shown to decrease caregiver stress and reduce or delay the transition from home to a care home (ADI, 2013). Active training, such as engagement of caregivers in skills training, role playing, and interactive practice have been shown to be more successful in reducing caregiver burden compared with passive methods—such as providing information only (Lykens et al., 2014).
REACH-TX is a skills-training and support program for dementia caregivers. It is based on the Resources for Enhancing Alzheimer’s Caregiver Health II intervention, which targets 5 caregiver domains (depression, burden, self-care/healthy behaviors, social support, and problem behaviors) and provides interventions to address each domain. REACH-TX provides risk assessment, education, skills training, and support for people caring for a person with dementia. The overall goal is to reduce stress and improve caregiver well-being. The program employs a trained dementia care specialist and involves 2-6 in-person contacts over a 6-month period (NCOA, 2020).
Practical guidelines for reducing caregiver stress include:
- Relaxation: calm your mind using mediation, deep breathing exercises, journaling, aromatherapy, music, or massage.
- Self-care: maintain a healthy diet, stay hydrated, get help, enroll your loved one in an adult daycare program, or sign up for respite care.
- Sleep: establish a “sleep-friendly” routine, turn off devices, reduce artificial light, limit noise and heat, keep a regular bedtime routine, avoid meals and snacks before bedtime.
- Exercise: engage in moderate aerobic exercise and strength training on a regular basis, explore exercises that promote relaxation and improve balance such as Tai Chi for Arthritis, Feldenkrais, yoga, walking, chair exercise, stretching, or swimming.
- Education: learn about dementia by reading, joining a dementia support group, or reviewing dementia education and caregiver programs online.
- Support: strengthen your support system by asking for support, seeking professional help, and confiding in friends.
Modified from Larkey, 2023
Although it is generally accepted that the accumulated financial, physical, and psychological stress of caring for a person with dementia may increase a caregiver’s risk of morbidity and mortality, recent population-based studies have suggested that morbidity and mortality rates for caregivers may be lower than for non-caregivers. This may be due to the to the physiological benefits of prosocial helping behaviors (Roth, Brown, Rhodes, and Haley, 2018).Tamara Sussman and Jack Lawrence provide an optimistic profile of care as they state, “While the journey of caring for a family member/friend with dementia is marked with unavoidable tribulations, it is also embedded with many rich positive experiences. Carers must adjust to the challenging behavioral changes linked to dementia, navigate complex healthcare systems, and simultaneously juggle life’s other responsibilities—but they often feel a sense of purpose, pride, and gratification in fulfilling their important roles” (Gautier et al., 2022).