Family issues in dementia: finding a new normal.

Caring for individuals with dementia poses significant hazards and can have lasting effects on the health, well being, and quality of life of family members. Families need guidance from physicians to support and maintain the dignity of the patient with dementia throughout the degenerative disease trajectory. There is a rational basis for family education and counseling strategies aimed at increasing effectiveness and reducing risks to families who provide care. Family care for patients with Alzheimer's should be directed toward defining a "new normal."

Social issues of the Alzheimer's patient and family.

Families caring for a person with Alzheimer's disease (AD) soon discover that it is unlike any other illness. Coping with a degenerative brain disease is much different than dealing with a physical disability. AD is more disruptive to, and has greater impact on, the family than other chronic diseases. AD caregiving carries with it a high financial, social, and emotional price. Families must work toward effectively coping with the disease, decreasing the harmful effects on the family, and keeping family conflicts to a minimum. Support groups can provide families with much-needed information on the disease, emotional and practical support, and an expressive or advocacy outlet. Formal services can help relieve some of the burden of caring for an AD patient. Family members must remember that there is no "right" way to care for a person with AD, and each family must determine, with the help of the appropriate professionals and services, how to best meet its own needs. Given the burdens of care, however, even small interventions may translate into improvements in the quality of life or confidence of the caregiver.

Diagnosis and treatment of Alzheimer disease and related disorders. Consensus statement of the American Association for Geriatric Psychiatry, the Alzheimer's Association, and the American Geriatrics Society.

OBJECTIVE: A consensus conference on the diagnosis and treatment of Alzheimer disease (AD) and related disorders was organized by the American Association for Geriatric Psychiatry, the Alzheimer's Association, and the American Geriatrics Society on January 4 and 5, 1997. The target audience was primary care physicians, and the following questions were addressed: (1) How prevalent is AD and what are its risk factors? What is its impact on society? (2) What are the different forms of dementia and how can they be recognized? (3) What constitutes safe and effective treatment for AD? What are the indications and contraindications for specific treatments? (4) What management strategies are available to the primary care practitioner? (5) What are the available medical specialty and community resources? (6) What are the important policy issues and how can policymakers improve access to care for dementia patients? (7) What are the most promising questions for future research? PARTICIPANTS: Consensus panel members and expert presenters were drawn from psychiatry, neurology, geriatrics, primary care, psychology, nursing, social work, occupational therapy, epidemiology, and public health and policy. EVIDENCE: The expert presenters summarized data from the world scientific literature on the questions posed to the panel. CONSENSUS PROCESS: The panelists listened to the experts' presentations, reviewed their background papers, and then provided responses to the questions based on these materials. The panel chairs prepared the initial drafts of the consensus statement, and these drafts were read by all panelists and edited until consensus was reached. CONCLUSIONS: Alzheimer disease is the most common disorder causing cognitive decline in old age and exacts a substantial cost on society. Although the diagnosis of AD is often missed or delayed, it is primarily one of inclusion, not exclusion, and usually can be made using standardized clinical criteria. Most cases can be diagnosed and managed in primary care settings, yet some patients with atypical presentations, severe impairment, or complex comorbidity benefit from specialist referral. Alzheimer disease is progressive and irreversible, but pharmacologic therapies for cognitive impairment and nonpharmacologic and pharmacologic treatments for the behavioral problems associated with dementia can enhance quality of life. Psychotherapeutic intervention with family members is often indicated, as nearly half of all caregivers become depressed. Health care delivery to these patients is fragmented and inadequate, and changes in disease management models are adding stresses to the system. New approaches are needed to ensure patients' access to essential resources, and future research should aim to improve diagnostic and therapeutic effectiveness.

The perspective of the person with Alzheimer disease: which outcomes matter in early to middle stages of dementia?

As more persons with Alzheimer disease are diagnosed earlier in the disease progression, their perspectives, values, and preferences warrant closer attention from clinicians, service planners and providers, and the research community. Demographic changes suggest that more persons with early-stage Alzheimer disease will be living alone. Their treatment, housing, and service preferences, as well as values about desirable health, mental health, and cognitive and functional outcomes may differ from those of their concerned families. Clinicians and researchers must identify relevant domains of life quality from the perspective of the person with dementia and develop individually sensitive, reliable, and valid instruments to assess, monitor, and evaluate outcomes of care and services.

When "the family" is not one voice: conflict in caregiving families.

Caregiving families rarely have one voice. This article presents a theoretical framework for normative family conflict in chronic care, identifies types of family conflict, and describes educational and case management models to prevent, identify, buffer, or potentially help resolve family care conflicts that pose barriers to care. Successful application of these models can result in greater family member accessibility for support to each other and enhanced family capacity to distribute equitably and effectively care responsibilities for chronically ill relatives especially those with Alzheimer's disease and other dementia.

Letting go: separation-individuation in a wife of an Alzheimer's patient.

Conflicts surrounding separation-individuation issues may affect decision making and reluctance to use available help among older spouse caregivers for Alzheimer's patients. This paper describes an intermittent, focused social work intervention to help overcome personal and intrapsychic barriers to using available help. Therapeutic goals, common themes, and implications for practice with caregiving wives are discussed, with specific attention to supporting the wife in her wish to "responsibly finish" rather than separate from a marital bond.

Overcoming barriers. Home care for dementia patients.

Barriers to appropriate in-home service use by Alzheimer's families may be caregiver based, agency based, or policy based. Agency-based barriers are best addressed by modified services and training to meet the unique care demands of cognitively impaired patients and their families. Policy-based barriers may be overcome with attempts to legitimize families as eligible recipients of long-term care services. But beyond access, equity, and cost or reimbursement issues, the Duke respite research demonstration uncovered significant personal and familial barriers that require more individualized approaches. Because objectively burdened spouse caregivers are often reluctant to spend on themselves, they may wait until a crisis forces a decision to ask for help. Unfortunately, scheduled in-home respite programs are not well designed as crisis services. In addition, many families initially fear that acceptance of in-home help means relinquishment of family control to strangers. Providers should take every opportunity to preserve and sustain family control by adhering to family preferences. Finally, many Alzheimer's patients cannot rationally assess their need for assistance, and they react with outrage to home care providers. Spousal caregivers are often reluctant to oppose the patient's strong preferences out of fear of personal reprisals when the worker leaves. One additional barrier deserves special consideration. Many family caregivers believe that if the patient has a bonafide disease (like Alzheimer's), then care decisions should be made by health professionals rather than family members or social workers.(ABSTRACT TRUNCATED AT 250 WORDS)

A prescription for promoting social work research in a university hospital.

The social work profession recognizes that research is vital to furthering its status and goals. However, the best methods to interest and engage clinicians in research are uncertain. This article posits a conceptual framework for implementing research in practice settings and describes the purposeful creation of an administrative context that facilitates research.

Early-onset Alzheimer's disease: clinical predictors of institutionalization and death.

Follow-up observations were made of 92 white patients with early-onset Alzheimer's disease to determine the demographic, clinical, and neuropsychological factors predictive of institutionalization or death. The cumulative mortality rate 5 years after entry into the study was 23.9%, compared with an expected rate of 9.5%. The 5-year cumulative rate of admission to nursing homes was 62.8%. The language ability of the patients on entry to the study, their scores on a brief screening test of cognitive function, and their overall ratings of clinical dementia were found to be predictors of subsequent institutional care and death. The age of the patients had a significant modifying effect on these predictive factors, resulting in a greater risk of institutionalization and death in younger patients with severe cognitive impairment as compared with older individuals with the same degree of dysfunction.

Family therapy and the dementia patient.

Caring for a relative with senile dementia often results in family problems. In this situation, the family usually turns to the physician for evaluation, advice, treatment and support. A specific strategy for family intervention is helpful and does not require an extensive commitment of time.