A Day in the Life
By Karen Wilkinson, RN, NHA, CLNC – CareerSmart® Learning Contributor
Did you know that an estimated 5.7 million Americans are now living with Alzheimer’s disease? At this time, ten percent of people 65 years of age and older have Alzheimer’s dementia. And as a person gets older, the percent increases. Of those age 75 years or older, 81 percent are diagnosed with Alzheimer’s or other dementias. Alzheimer’s is currently the sixth leading cause of death in the United States. Without a medical breakthrough, projections put the overall number of those with Alzheimer’s dementia at nearly 14 million by 2050. These figures are alarming. As healthcare professionals, we are only looking at the tip of the iceberg as we care for those who are currently diagnosed with this debilitating and deadly disease who live in our communities and facilities. But, the care burden is even larger than our eyes see each day. The latest statistics from the Alzheimer’s Association indicate 16.1 million family members, friends, and other caregivers are providing unpaid care for people who have Alzheimer’s and other dementias. In 2017 alone, this unpaid care was estimated to involve 18.4 billion hours, and have a value of $232 billion.
We need to acknowledge the care challenges that family members and other unpaid caregivers face. Statistically, over half of primary caregivers are taking care of their parents; however, it is estimated that 250,000 children and young adults are also helping out. About 60 percent of those caregivers are employed, working an average of 35 hours per week while caregiving. What does a day in the life of an unpaid caregiver look like? Each day is unique, just as each person with Alzheimer’s disease or dementia is unique. There may be good days, not-so-good days, or just plain bad days, and caregivers must adjust in order to complete the routine tasks of care. Caregivers must help with activities of daily living (bathing, dressing, ambulation, toileting/incontinence care, eating) and manage co-morbid medical conditions, as well as help with other chores around the house, such as shopping, meal preparation, making doctor’s appointments, providing or arranging transportation, managing finances, helping with medication reminders or actual medication administration, helping with treatments, and monitoring behaviors, such as anxiety or wandering. If fortunate, the list might also include hiring and supervising paid caregivers or arranging for an adult day health program. This list is not exhaustive, but for the caregiver, it can be exhausting.
As Alzheimer’s progresses, care challenges increase as well. Caregivers may have increased emotional stress, depression, health problems, and financial challenges. Supportive interventions for caregivers currently include support groups, either on-line or in person, therapeutic counseling, education and care training resources, respite, and care management. Is there anything more that we can do? In discussing how to enhance health care for family caregivers, the Alzheimer’s Association notes that “comprehensive care planning is a core element of effective dementia care management and can result in the delivery of services that potentially enhance quality of life for people with dementia and their caregivers.” As we have the opportunity to develop care plans in these situations, talk with the caregiver and develop goals and interventions that are supportive of the situations they need to manage on a daily basis. For example, specific interventions may need to address evolving changes in personality and behavior, such as increased anxiety, suspiciousness, withdrawal from normal activities, wandering, or sleep disturbances; or, challenges with activities of daily living like incontinence, hygiene, bathing, and/or management of clothing. Good care planning is more than just “paper compliance.” It supports caregivers to enhance quality of life.