Neurodegenerative Disease and the Burden on Caregivers By Steven Mandel MD, Heidi Mandel PhD LMSW, Gayatri Devi MD, MS, FACP, FAANSally, a 68-year-old trim and petite brunette is married to Bob, 72, who has developed Alzheimer’s disease. A soft-spoken man, Bob, an accountant who handled all family finances, is now unable to do so. Sally has had to step in. Their two grown children live in other states and as Sally put it, “They have their own lives, I don’t
want to bother them. Still,” she continued wistfully after a pause, “it would be nice if they called a little more often.” Sally has had to not only take over all finances, she now makes all decisions and feels somewhat alone, despite the love lavished on her by her husband. “I didn’t know from a bill,” Sally said, “Bob took care of everything. Now, I am stumbling through.” One out of nine people over the age of 60 have dementia as do one out of three people over the age of 80, the majority being either Alzheimer’s disease or a mixed dementia from Alzheimer’s and stroke. The portion with mild cognitive impairment has: 1. concern about changes in
cognitive ability, 2. impairment in one or more cognitive domains, more than expected for age and education. 3. preservation of independence in functional abilities 4. no significant in-social or occupational loss of functioning 5. one third progressing to dementia in 5 years. As the disease progresses, there is memory loss, impairment in planning and solving problems, difficulty with familiar tasks, challenges to understanding visual information, impaired speaking and writing, misplacing of things, poor judgment and decision making, withdrawal from social interaction, difficulty driving, changes in personality and mood, and delirium and psychosis. In the severe stages, there may be a
need for assistance with activities of daily living, sleep disorders, delusions, wandering, poor communication and inability for self-care and personal hygiene. There may be amnestic and no amnestic characteristics. Amnestic means recall and learning new information. Non-amnestic means problems with language, word-finding, visual-spatial, judgment and problem-solving. Risk Factors that may increase the probability of neurodegenerative disease include hypertension, high lipids (LDL), cardiovascular disease, diabetes, obesity, peripheral arterial disease, sedentary lifestyle, lack of exercise, head trauma, medications to Include benzodiazepines, smoking, air pollution,
pesticides, genetic predisposition, low educational status, physical frailty, poor social support, and diminished hearing. Increasing age and lower educational level and diagnosis of hypertension and diabetes are associated with an increased basal metabolic index that is associated with worse cognitive function and poor verbal fluency. Differential diagnosis of neurogenerative disease includes Lewy Body disease, Alzheimer’s with prominent memory loss, corticobasal degeneration, Creutzfeldt-Jacob disease, frontotemporal dementia, hypothyroidism, neoplasm, normal pressure hydrocephalous and atherosclerotic cardiovascular disease. Vascular dementia accounts for 20% of neurodegenerative
disease. Factors that may improve cognition include: 1. Cognitive training programs 2. Exercise 3. Healthy diet – Mediterranean diet, MIND diet 4. Social connection 5. Limiting alcohol 6. Not smoking 7. Management of stress 8. Learning new skills Caregivers can be family members, significant others or professionals. Burdens on caregivers include poor nutrition, high
levels of stress anxiety and depression, family conflicts about sharing responsibilities and treatment management and lack of sleep. For professionals to be qualified to care for those with dementia they need to understand how the disease progresses and what to expect. Also, how to communicate best with the doctor and medical team, how to increase the quality of life for the patient and the family including walks, music, games, and adequate sleep. As the disease progresses, there may be delirium and psychotic behavior that may challenge the coping capacities of the caregivers such as unpredictable behavior including wandering and resistance to accepting care. Caregivers for those with dementia suffer a higher level of stress and depression because of the progressive nature of dementia. Caregivers suffer from physical, financial and emotional burdens. There are three stages for caregiver help. In the early stage of dementia, the caregiver helps the family member maintain independence, establishes routines, such as sleep, exercise, diet, and maintaining activities that they enjoy. In the middle stage, the caregivers help with dressing, day to day functioning, and emotional stability. In the late stage, caregivers help with personal hygiene issues such as incontinence, and with emotional dysfunctions such as delusions and wandering. The
caregiver needs an approach of compassion and respect for the dignity of the family member because of the unpredictability of the behavior patterns as the disease progresses. Positive strategies to manage caregiver burden include: 1. Seeking support from your own or professional network, such as friends, family, community support groups, and the health and mental health teams. 2. Direct physical and emotional reducing behaviors, such as meditation, yoga, and breathing exercises. 3. Eating well and getting sufficient sleep and managing one’s own medical problems
well. 4. Other local and community resources like meal delivery, transportation, home health aides and additional medical advice resources. Gayatri Devi, MD, MS, FACP, FAAN is Clinical Professor of Neurology at Downstate Medical Center, Attending Physician at Lenox Hill Hospital and Northwell Health Director at Park Avenue Neurology.
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