The month of November is dedicated to Alzheimer awareness. Alzheimer disease (AD) isn’t easy for anyone affected - patient, caregiver or family. Often, as nurses, our primary focus is on the individual with AD, but it’s also incredibly important to remember what caregivers go through during the journey.
Nurse teams can begin by imagining themselves in the place of a caregiver. Imagine watching your once sharp, witty, independent, and outgoing parent now declining before your eyes. Hearing the words that your loved one is diagnosed with AD is one of the hardest truths to face. Suddenly, you are placed in a caregiver role - faced with making many important decisions while feeling overwhelmed and worried for the future.
Research indicates that patients with AD will experience more hospitalizations than others their age. This, coupled with the increasing prevalence of the disease means that at one point or another, we may all cross paths with families and individuals living with AD—not only in the health care setting but in our own personal lives. This month brings an opportunity for nurse leaders and educators to remind staff about the importance of caregiver wellbeing.
Caregivers and an Alzheimer disease diagnosis
Early diagnosis and treatment of AD can lead to better quality of life. It’s not only important for the individual, but also for the caregiver or family members. Knowing the diagnosis in the early stages of the disease means the patient and family can plan for the future. It allows the patient to be involved in the current and future living arrangements, personal care, and financial and legal matters while still having the ability to make decisions. Arranging for future plans may also help to bring a small sense of comfort to the family.
If a nurse or member of your health care team encounters a caregiver questioning whether their loved one is having memory issues and is concerned about the possibility of AD or dementia, encourage the caregiver to have their loved one evaluated. Provide the caregiver with information and resources. Remember, knowledge is power.
Supporting caregivers through AD challenges
After the official diagnosis has sunk in, a caregiver may feel overwhelmed. Certain aspects of their lives, as they knew them, will now change. Some caregivers may have no medical background at all, leaving them with having to make difficult decisions or not knowing what steps to take next. The caregiver may often feel alone and bear the weight of responsibility for their loved one.
Different people handle stress and emotions differently - some express feelings while others don’t. The caregiver may feel a sense of loss and sadness. During the caregiving journey, feelings of guilt may begin to emerge such as for losing a temper, feeling impatient, or even having to take away the loved one’s independence (driving, living arrangements, etc.). Caregivers can get so busy and absorbed caring for their loved one that they prioritize others’ needs before their own. Research indicates that caregivers of individuals with dementia experience higher rates of anxiety, depression, and poorer quality of life than other caregivers.
Demographic changes within the US population in recent years indicate that there are now more “sandwich-generation” caregivers. For the sandwich-generation caregivers, they are faced with still caring for their dependent children while caring for an aging parent/s. Additional statistics on caregivers for individuals with dementia note that approximately two-thirds are women, and about 1 in 3 caregivers is age 65 or older.
Financial strain or burden is often experienced by caregivers. Some spend money from their own savings or retirement accounts which can put their own financial security at risk. Groceries, travel, medical supplies, medications, etc. are just a few areas where caregivers utilize their own finances to cover costs.
Caregivers can also be affected by employment changes. Work schedules may need adjustment to accommodate care needs. Caregivers are faced with decisions about going into work late, leaving early or taking additional time off. They may even need to take a less demanding job, a leave of absence, or even consider an early retirement. Some are even faced with warnings about performance or attendance. These are just some of the many aspects of life that are impacted for caregivers.
Ways AD caregivers can prioritize self-care
Self-care is essential for all human beings. If the caregiver isn’t caring for oneself, he or she cannot be an effective caregiver for their loved one. The recipient of care is counting on them. Here are some reminders for caregivers that can help to enhance aspects of daily self-care:
- Seek out ways to get educated on the disease process and its progression
- Find support. Local chapters of the Alzheimer’s Association can provide assistance in finding care and resources in the community
- Use relaxation techniques (visualization, meditation, breathing exercises, etc.)
- Maintain physical activity and exercise, even if it’s for 10 or 15 minutes a day
- Maintain regular check-ups with health care providers
- Set aside “alone time”
- Ask for help when needed
- Learn about respite care so there can be opportunities for caregiver rest.
- Ensure legal and financial plans are in place for the individual with AD. Consulting with an elder lawyer or financial planner may be a helpful and necessary source of assistance
- Seek professional mental health help if needed (counseling, support groups, etc.)
- Explore online support options if unable to get away from the home
- Visit the local church, temple, mosque, etc. Some people find great peace and comfort in their faith and places of worship.
There are many organizations that provide a multitude of information, resources, and support. Seeking out support—in whatever form-- helps to remind our caregivers they aren’t alone and that they aren’t powerless. Lastly, as a someone who has a parent with AD, I’ve learned not to focus so much on the past and what has been lost. Rather, it’s important to focus on the present and the meaningful moments that can still be cherished with our loved ones.
Additional resources for AD caregivers and nursing staff
Alzheimer’s Association: https://www.alz.org
Alzheimer’s Foundation of America: https://alzfdn.org
Family Caregiver Alliance: https://www.caregiver.org
National Institute on Aging: https://www.nia.nih.gov/
