FAMILY ISSUES IN DEMENTIA: Finding a New Normal
Section snippets
FAMILIES ARE THE PRIMARY CARE DELIVERY SYSTEM FOR CHRONIC CARE
Families provide the bulk of chronic care over the course of a dementia. Seventy percent of the estimated 4 million Americans with Alzheimer's disease are cared for at home, primarily by a spouse or daughter; 50% of these family caregivers live with the patient over the course of an illness for between 3 and 20 years.38 Family care is preferred, based in strong family values that cross cultural and ethnic lines. Families have been described as a “dam against the flood of Alzheimer's disease
IDENTIFYING THE PROBLEM
Long before family members identify themselves (if they ever do) as family caregivers, they become the information seekers for their impaired relative. These family members may feel disloyal questioning what the patient does not perceive as a problem. Before seeking a medical evaluation, the family member may go online or attend a workshop or support group in search of some descriptions that correspond to the uncharacteristic or bizarre changes in their relative's performance, behavior, or
OFFICE VISITS
Ideally, two family informants should accompany the patient to an initial evaluation, prepared with written questions or concerns for the physician. Although the patient is entitled to initial time alone with the physician, later time alone with family informants will be invaluable in assessing functional impairment and the impact of other family stressors. Many families prefer to speak privately with the physician because they are uncomfortable confronting the patient with his losses. If the
COMMON REACTIONS TO DIAGNOSIS
Doubt and denial are common initial reactions to diagnosis in both patients and families. Acceptance comes at different times or not at all to some individuals. Family caregivers may find denial helpful in retaining hope for improvement. These are the individuals who are likely to emphasize the probable nature of the diagnosis and the need for autopsy confirmation. Confronting denial in an initial visit is often counterproductive. It may be more helpful to encourage the family to act as if it
SUCCESSFUL FAMILY COPING STRATEGIES
Studies of caregiver coping have generally concluded that active problem solving or old-fashioned ingenuity are quite adaptive in coping with dementia care.54 As an example, business cards are distributed by Alzheimer's Association chapters for families to use when they take a person with dementia to a restaurant or public place. The card can be discreetly handed to a waiter or salesperson. The card reads, “Please understand. My companion has a memory disorder. Please direct your questions to
FAMILY ASSESSMENT
Although busy clinicians have little time to work extensively with Alzheimer families, it is helpful to be alert to questions that might trigger the need for referrals to Alzheimer's Association services, counseling, home help, day programs, or placement. Cultural values, expectations, and health beliefs will influence how families make care decisions and their receptivity to physician guidance.
One of the most helpful questions to elicit a picture of family functioning is to ask the family to
FAMILY EDUCATION
Throughout the course of dementia, regular physician monitoring provides an ideal opportunity for timed and dosed family education. Physician guidance can improve the quality of family care and minimize caregiver burnout. First, physicians can clear up common misconceptions about the disease. For example, some families assume that treatment of Alzheimer's is about removing exposure to aluminum pans or chelation treatments.
Physicians can use the time with the family to create common realistic
SUPPORT FOR CARE DECISIONS
The family in Alzheimer's care rarely speaks with one voice.18 Care decisions necessitate clarity about whose needs are being considered, especially if spouses both have medically complex conditions. Key questions become (1) how much care is “enough”; (2) how long this help will be needed; and (3) how to evaluate the costs and benefits of various services. Remind families that there is no perfectly fair or equal distribution of responsibility in Alzheimer's care. Just because three children
USE OF FORMAL OR PAID SERVICES
SERVICE SMORGASBORD: NONLINEAR CONTINUUM Information/referral/care management: Telephone, on-line, or in person Clinical trials/nonpharmacologic therapies for patient and caregivers Counseling (individual, group, family; legal, financial, insurance) Structured group treatment for caregivers: Psychoeducational, meditation, progressive relaxation, stress or anger management, skills training, multicomponent outpatient family treatment Educational interventions: support groups, skills training seminars, problem-solving courses, in-home
MAN JOINS SUPPORT GROUP........ AND LIVES
Duke studies of support group participants suggest the benefit of support group attendance may be in the exposure to people with experiential similarities.20, 42 There is no need for long explanations of a bizarre “new normal” in family life. Support group members are excellent sources of current consumer information on local services and are often models of coping and survivorship. Support groups also offer expressive or advocacy outlets for frustration at lack of quality services. But not
FAMILY RESOURCES AND WEBSITES
AARP. Caregiving guides. 800-638-6833; www.aarp.org/indexes/health.html #caregiving
Agency for Healthcare Research and Quality (AHRQ). Patient and Family Guidelines for Alzheimer's, depression, incontinence, stroke; www.guideline.gov
Alzheimer's Association. 800-272-3900; www.alz.org
Alzheimer's Disease Education and Resource Center (National Institute on Aging). 800-438-4380; www.alzheimers.org or www.alzheimers.org/trials/index.htm; for clinical trials in Alzheimer's www.nih.gov/nia/new
THE LONG HAUL
The greatest barrier to effective dementia care decisions is the lack of available, quality, and affordable community and institutional options. Family care outcomes are mediated by the health of the primary caregiver, the adequacy of family support, caregiver competence, and the quality and extent of respite care available, but even more by the psychotic symptoms or resistance to functional assistance that impose constant supervision demands. Research documents behavior changes and functional
END-OF-LIFE DECISIONS
End-of-life care poses unique problems for families whose loved ones cannot verbalize pain, who resist personal care, who no longer recognize or show appreciation for care, or who shout or moan incoherently.24 Families need to be prepared to expect increasing frequency of infections, dehydration, and eating problems in end-stage care. Families should also be prepared for patients who spit out or choke on food. It is helpful to remind families that research suggests that tube feeding can be
SUMMARY
Family care for someone with dementia requires constant adaptation to loss, but with physician support, many families are able to “find a new normal” in relationships with the person with dementia. Families look to the physician first for active treatment, 19, 20 monitoring of comorbid or acute conditions, continuity, reassurance, and referrals. Over the course of a dementing illness, family members also look to the physician for relevant current information or interpretation of new findings,
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Cited by (18)
PHYSICIAN-PATIENT RELATIONSHIP IN DEMENTIA CONTEXT
2016, Revista Medica Clinica Las CondesUnobtrusive assessment of activity patterns associated with mild cognitive impairment
2008, Alzheimer's and DementiaCitation Excerpt :Early detection of cognitive decline preceding the onset of dementia or functional impairment is important for many reasons [1,2].
Ethical issues in the care of the patient with dementia
2008, Handbook of Clinical NeurologyCitation Excerpt :Family members who provide home care for the demented patient and usually serve as the patient's surrogate decision‐maker may create a strain on the patient–physician relationship when they become the “patient”. The stresses on primary caregivers (usually spouses or adult daughters) are obvious and have been studied in detail (Zarit et al., 1985; Gwyther, 2000). Maintaining primary caregiver health is an important goal to help ensure the patient's optimal health and to forestall institutionalization of the patient that certainly will occur with failure of the primary caregiver.
Working With Families in Long-Term Care
2007, Journal of the American Medical Directors AssociationCitation Excerpt :Other strategies include seeking compromises, finding common ground, and helping the family weigh risks and benefits of alternative courses. Family education may also prove helpful, augmented by written and electronic resources.18 When all avenues are exhausted, stating the limits of what one can and cannot do is prudent while awaiting further development and family movement.19
Treatment of the psychological and behavioural disorders of Alzheimer's disease
2005, Presse MedicaleCare of patients with Alzheimer's disease and their families
2001, Clinics in Geriatric MedicineCitation Excerpt :Following a comprehensive evaluation the clinician is faced with determining the most likely diagnosis and explaining tests results and findings. Although still disputed, it is sound practice for the physician to disclose the diagnosis of Alzheimer's to both the patient and family.1,8 This time of diagnosis is a critical period in forming the patient's and family's relationship with the clinician.
Address reprint requests to Lisa P. Gwyther, MSW, Bryan Alzheimer's Disease Research Center, Box 3600, Duke University Medical Center, Durham, NC 27710
The author gratefully acknowledges funding from the Joseph and Kathleen Bryan Alzheimer's Disease Research Center's National Institute on Aging grant #5 P50 AG05128-16.
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Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, Durham, North Carolina