Family caregiving issues

When a diagnosis of dementia is made, the physician is pivotal in providing the knowledge and resources that are needed to care for the patient. Because family members provide the majority of care for persons with dementia, they are an essential resource for the patient and the health care system. Understanding and attention to family caregiver needs and challenges are therefore essential aspects of caring for the person with dementia. A physician/caregiver/patient relationship is the recommended approach for meeting the needs of the patient and family caregivers.

Who are the caregivers?
The responsibility for family caregiving is assumed disproportionately by women (72 percent) who are themselves elderly (spouses) or have multiple roles (daughters or daughters-in-law).   

• Physicians must be aware that caregivers as a group are physically, emotionally, and financially vulnerable and are often the "hidden patients."    
• Physicians should also be aware that nursing home placement of minority patients is often deferred until higher degrees of cognitive impairment are reached. This may further burden the family and the physician as alternative methods of maintaining adequate care are sought. 

Physician/caregiver/patient partnerships

• To be effective and knowledgeable caregivers, family members rely on physicians to provide information about dementia symptom management and the availability of support services.     
• Physicians can be proactive by asking caregivers how they are coping and linking them with resources (eg, the  Alzheimer’s Association). This can help improve caregiver beliefs in their own capabilities and lead to more successful and enduring caregiving.    
• Physicians can work collaboratively with nurses or social workers who are knowledgeable about symptom and behavioral management strategies.    
• Referral to a support group should be recommended for all caregivers.    
• Remember that out-of-town relatives often call the physician to express concerns about treatment or management of their relative. Families in conflict will need the same information on diagnosis and treatment plan from the physician.

Needs of caregivers to dementia patients
Because dementia has a deteriorating course over an extended period of time, care problems can be anticipated and planned for well in advance. 

• The physician can help family members anticipate changes, plan for role transitions, and arrange for education and support that is needed to provide care.     
• In the earliest stages of the disease, it is helpful to encourage caregivers to identify a health care proxy for the person with dementia. Encourage the completion of a Durable Power of Attorney for Health Care form and have copies available in the office. (Copy of completed form becomes part of patient record.)    
• Caregivers need to maintain their personal health and vitality to provide continuing care for the demented patient.    
• Caregivers should become familiar early in the illness with adult day-care services and in-home or in-facility respite services.    
• Encourage caregivers to visit and evaluate several long-term care facilities well ahead of the need for placement. Help caregivers understand from the start that institutionalization may be a normal progression in the process 

Caregiving challenges

• Sleep problems and caregiver exhaustion are two of the most common reasons persons with dementia are placed in nursing homes. Causes of sleeplessness in dementia patients include pain, lack of exercise and activities, anxiety, agitation, or too much fluid or caffeine late in the day.    
• Urinary incontinence is the second leading reason that families institutionalize their loved ones with dementia. Urinary incontinence in persons with dementia should be evaluated for treatable causes, including urinary tract infections, electrolyte and calcium abnormalities, prostatic hypertrophy, and estrogen deficiency. A regular toileting schedule at two to three hour intervals or verbal prompting may also alleviate this symptom.    
• Agitation and aggressive behavior have been reported in 65 percent of community-dwelling persons with dementia. Reasons for agitation or aggression include overstimulation, physical discomfort, unfamiliar surroundings or persons, complicated tasks, and frustrating interaction, as well as more serious reasons as paranoia, delusions, or hallucinations.     
• Caregivers may be embarrassed or ambivalent about discussing inappropriate sexual behaviors exhibited by persons with dementia.     
• Persons with dementia are often reluctant to stop driving when safety is at issue.
• Repetitious questions may be due to short-term memory loss and an understimulating/overstimulating environment leading to anxiety, feeling out of control, or fear. 

Legal issue

• Caring for a person with dementia may impose financial strain. The physician can explore this problem with the caregiver and make early referral to legal services for future decision-making and financial planning.