Working with the Patient and Caregiving Family

Darby Morhardt, M.S.W.

Although the patient’s illness is the first area of concern for the physician, it is also important to understand how the person’s illness is affecting the whole family. Because family members provide the majority of care for older adults, they are an essential resource for the patient and the health care system. Understanding and attention to family caregiver needs are therefore essential aspects of caring for an elderly patient. Any illness can create stress and change in a family system. Certain themes, difficulties and reactions are common; however, since each patient is unique and every family is different, there will be variations in how each family comes to grips with the difficult situations they face. Understanding and attention to family caregiver needs are therefore essential. A physician/caregiver/patient partnership relations is the recommended approach for meeting the needs of the patient and family caregiver(s).

Physician’s proactive responses to the needs of a caregiving family, by asking them how they are coping with caregiving and linking them with community resources can help improve family caregivers’ beliefs in their own capabilities and lead to more successful outcomes. To be effective and knowledgeable caregivers, family members rely on physicians to inform them of the diagnoses and future implications. Studies have shown that the education of dementia caregivers increases chances of adherence with treatment (AD Standards Committee). Following this education, it becomes the responsibility of the physician to direct the affected individual and family to available resources. Social workers and nurses, who are knowledgeable about illnesses common to the older adult, symptom and behavioral management strategies and the availability of support services are an invaluable resource for the physician both in the office and during hospitalization. If these services are not readily available to the physician it will be essential that the physician have information regarding referral to community counseling services, support groups, and respite services.

Family Dynamics

It has been said that coordinating care for an older adult brings out the best in some families and the worst in others. The management of any illness sets familiar family dynamics in motion.

• Some families have experienced health crises and are able to muster resources effectively, while other families are less able to manage.
• Tension and disagreements among family members may become barriers to treatment.
• Old conflicts may resurface in the wake of an older adult’s declining abilities and increased dependency that may make the caregiver-care recipient relationship strained or ineffective.
• If the physician recognizes family dynamics that are problematic for caregiving, referral to other providers should be considered so that the time required to resolve family conflicts and create strategies for improved communication and cooperation is provided.

Long Distance Family Caregivers

• Adult children and other family members may live some distance from the older adult and may feel "left out of the loop" by family members who live nearby.
• Long distance family members often call the physician to express concerns about treatment or management of their relative.
• Raising the awareness of all family members about the needs of the long distance member and to the importance of one family member to serves as liaison between the family and health care providers (this is also essential in large families, also) will be helpful.
• Securing the services of a nurse or social worker who is knowledgeable about geriatric issues and family caregiving and can communicate with family members and assist them with caregiving strategies is advised.

Who are the caregivers?

Studies by the National Family Caregivers Association, the National Alliance of Caregivers, and the Alzheimer’s Association reveal:

• Most have known the patient intimately for most of their lives.
• Most are spouses or adult children.
• The vast majority are women (75-80%).
• One-half live in the same residence.
• On average, caregivers are in their mid-50s and this is rising as the population ages.
• One-fourth are married and have children under the age of 18 living at home.
• One-half of those under age 65 are employed and 71% of these work more than 31 hours per week.
• One-fourth spend over 40 hours per week in caregiving activities and 40% provide constant care.

In summary, the responsibility for family caregiving is assumed disproportionately by women who are elderly or, if younger, have multiple roles.

Consequences of Caregiving

The physical and mental health of the caregiver must not be ignored. A review of studies report elevated levels of depressive symptomatology among caregivers (Schulz, 1995) and that if caregivers were more depressed, they were more likely to place patients in nursing homes (Mittleman, 1996). Therefore, it is essential to provide caregivers with sufficient support to mitigate the emotional and physical toll of caring for their older relatives, in order to maximize the time that home care remains an option for providing care and protect the well-being of the caregiver or patient (Mittleman, 1993). Caregivers consistently report that caregiving results in strain, high levels of stress and nearly one-half say they suffer from depression.

While more caregivers are women, it is important for physicians to be aware that there does not appear to be a gender difference associated with depression. Caregiving places great burdens on caregivers, regardless of gender, thus, it is important for clinicians to screen for depression and advise all caregivers that depression is a treatable disorder (Bergman, 1994).

Although many caregivers report the burden of caregiving, others find that caregiving offers them fulfillment. For most, it is some of both. For example, adult children may feel that caregiving for a parent is an opportunity to "repay" their parents for the care and attention they once received. Some recognize the development of inner strength as a result of caregiving, closer relationships, and the learning of new skills such as money management, organizational or proactive skills.

Placement Issues

There are no absolute medical or psychiatric criteria for institutionalization and the majority of older adults are not institutionalized. Predictors of institutionalization include patient characteristics (women are more likely to be institutionalized than men, older adults are institutionalized more than younger-old adults, those with low income are institutionalized more than high income, those living alone, and those displaying dementia related problems and behaviors are institutionalized more (Lieberman, 1995). Other criteria for institutionalization include incontinence, an inability to cooperate in care for self, loss of recognition of caregiver, when a paid caregiver must leave, when the primary caregivers’ health is at risk, when the primary caregiver doesn’t feel he or she can continue, when there is no family to assume role of caregiver when there is very disruptive behavior (Pfeiffer, 1995). The physician must be willing to discuss long-term care placement in anticipation of future needs so family members can plan.

AD Standards Committee. (n.d.) Standards of care of dementia patients. Unpublished.

Bergman, B. (1994) Health profile of spousal Alzheimer’s caregivers: depression and physical health characteristics. Journal of Psychosocial Nursing, 32(9), 25-30.

Lieberman, M.A. and Fisher, L. (1995) Predicting institutionalization of patients with dementia: the impact of disease severity, care setting and use of community services. Facts and Research in Gerontology, 63-79.

Mittleman, M., Ferris, S., Steinberg, G., Shulman, E., Mackell, J., Ambinder, A., and Cohen, J. (1993). An intervention that delays institutionalization of Alzheimer’s disease patients: treatment of spouse-caregivers. The Gerontologist, 33(6), 730-740.[Citation]

Mittleman, M., Ferris, S., Shulman, E., Steinberg, G., and Levin, B. (1996). A family intervention to delay nursing home placement of patients with Alzheimer’s disease. JAMA, 276(21), 1725-1731.[Citation]

Pfeiffer, E. (1995) Institutional placement for patients with Alzheimer’s disease: How to help families with a difficult decision. Post Graduate Medicine, 97(1), 125-132.[Citation]

Schulz, R., O’Brien, A., Bookwala, J., and Fleissner, K. (1995). Psychiatric and physical morbidity effects of dementia caregiving. The Gerontologist, 35(6), 771-791.[Citation]