by Catherine Harris PhD, RNCS
It is often alluded to by the press that families abandon their family members when long-term chronic illnesses occur. Nothing could be farther from the truth. Families provide 75% to 80% of the care for people with Alzheimer’s disease. Families, through love, pride, or economic constraints, care for their disabled member at home as long as possible. The benefits of a familiar setting and routine found in home care are many, but the debilitating and chronic nature of the illness imposes an enormous financial, social, physical and psychological burden on the caregiver. Medical care, equipment and supplies, as well as loss of income through care demands contribute to financial burden and relationships that have developed over a lifetime are disrupted.
Through increased susceptibility to physical illness is a serious problem, the greatest toll is in the mental health of the caregiver. Four times as many family caregivers take some kind of psychoactive drug than the general population. Alcoholism and heavy reliance on prescription and over the counter medications are often seen among family caregivers. Chronic fatigue, anger and depression, family conflict, loss of friends and hobbies, no time for self, worry that they (the caregiver) would become ill, guilt and difficulty assuming new roles and responsibilities are problems caregivers cite for themselves.
There are nearly 10 million Americans caring for a person with Alzheimer’s disease or other forms of dementia in the United States.
- These are primarily women (72%) who are either adult daughters or wives. Adult daughters comprise 29% of caregiving, wives make up 23% and husbands 13%.
- The average age of Alzheimer caregivers is 57 years, though 25% are in the 65 – 74 age range and 10% of caregivers are over the age of 75.2.
These statistics reflect several important concerns of the Alzheimer care community. They indicate the effect upon the personal health of family members as well as the American Health Care system of the stress of caregiving. Researchers and health care providers alike have been investigating methods of helping families cope with the overwhelming task of caring for someone with dementia. The stress is real. Stress from frustration, lack of sleep, guilt, and anger lead to distress. Distress leads to a lowered immune system which increases the susceptibility to infection and other illnesses and accidents resulting in injury. In the older person, this can result in conditions that prohibit caring for their family member.
The emotional impact of caregiving is profound. Adult children experience the reversal of a lifetime role with their parents: being a parent to their parents. Wives and husbands take on the role of their spouse in addition to caring for them in a severely functionally impaired condition. Wives who have never handled the family finances are now required to learn. Husbands who have never managed a kitchen or family laundry needs must learn these chores. Most importantly, there is the sadness and grief of losing a family member “as they were known” to be.
Some families have strong support systems in place and are able to bring these into play. In some situations, the support is geographically too distant to offer much material support. Adult children often have teen-age children to care for – a major responsibility. In many families, both parents work or have other obligations requiring their attention. Facing a new and challenging situation, families do not have the tools or information to cope. Occasionally, prior family conflict or abuse within families complicates the caregiving situation.
Coping with Caregiving
Regardless of the circumstances of any person or family caring for a family member with any form of dementia, there are some guidelines that can be considered to lessen the stress associated with care.
- Consider the positive and beneficial aspects of caregiving. These include giving back to someone who gave to you; feeling and being needed; a sense of accomplishment; character building (patience, forgiveness, endurance, humor); closer family ties; and valuing the present.
- Avail yourself of “Respite Care”. Respite care is a service that can provide a few hours of relief for family caregivers in the home. It can also be overnight, week-end or two week vacations in a residential care facility. Day care centers can also offer respite from the intensity of daily caregiving. This may also include moving the family member to a secure environment in a care facility, where the individual can receive safe and beneficial care and where family members can participate in many aspects of care and can visit at any time.
- Care for the caregiver: Family caregivers must monitor and maintain their own health. As indicated above, the distress associated with caring for a family member with Alzheimer’s disease can have a devastating effect, especially on elder family caregivers. If the caregiver becomes incapacitated from this stress, who will care fort the affected person?
- Lastly, caregivers must maintain their own leisure and social ties. The course of Alzheimer’s disease and other dementing illnesses is long, but eventuate in death. When the family member dies and the grief has diminished, the caregiver will need to reestablish a life. Sometimes the involvement in an intense caregiving situation is so all consuming that reentering the social world is difficult. It is essential that attention to the caregiver’s life outside of the caregiving role be maintained. Church, clubs, vacations work, and family activities should continue throughout the course of the illness, so that when the loved one is gone, there are welcoming horizons that beckon.
1. Alzheimer’s Disease Facts and Figures. (2007). Alzheimer’s Association. Chicago, IL.
2. Stone R, Cafferata GL, and Sangl J. (1987). Caregivers of the frail elderly: A national profile. The Gerontologist 27:616-626.