Caring for a loved one diagnosed with Alzheimer’s is a challenge a growing number of Americans are forced to accept. The more than five million Alzheimer’s sufferers are at least partially cared for by 15 million brave family members and loved ones — many of whom provide this service unpaid.
The emotional and health toll on these caregivers is a problem in and of itself, as 35% of caregivers reported their health getting worse while taking care of an Alzheimer’s patient. Compared with 19% of caregivers who reported worsening health problems when taking care of their loved ones suffering from other ailments, it is clear that caring for a loved one with Alzheimer’s presents its own challenges.
Perhaps the biggest reason for emotional and financial issues is unpreparedness. No person wants to picture their loved one getting Alzheimer’s, and no one wants to picture their own lives changing because of it, either. Even those who try to prepare have difficulty doing so, as many do not have the financial means or the emotional support system in place to work through the stress of caregiving. However, every 66 seconds someone in the United States gets diagnosed with Alzheimer’s, and understanding the challenges that loved ones face is the first step to successful caregiving.
The Emotional Toll
A diagnosis of Alzheimer’s to someone you love affects the whole family. The emotional toll of seeing the gradual decline of someone you care about can be unsettling and overwhelming. One of the most unsettling aspects of caring for a loved one with Alzheimer’s is the time: people with Alzheimer’s live for an average four to eight years with the disease, but many live longer. The emotional toll during the long, slow deterioration of a loved one leads to caregiver burnout. Alzheimer’s caregivers are seven times more likely to experience the daily physical, emotional and mental exhaustion leading to caregiver burnout, and they are three times more likely to feel extreme stress than other caregivers.
The other cause of caregiver burnout is how caring for your loved one with Alzheimer’s affects your daily routine. Most Alzheimer’s caregivers spend over 25 hours a week caring for their loved one. As a result, 38% reported having a difficult time juggling work with care. Employment is not the only thing that can be hampered by caring for a loved one with Alzheimer’s, as tending to the home as well as the personal health of the caregiver can be neglected in favor of caregiving duties.
Women carry the largest caregiving burden when it comes to caring for a loved one with Alzheimer’s. Women are more likely to leave their job to provide care for a loved one, and they are also twice as likely to feel guilt over their loved ones Alzheimer’s caregiving needs. In fact, women were 61% more likely to feel extreme guilt in their role as an Alzheimer’s caregiver as opposed to other caregivers.
Stress on the Family
This stress is often shared by all members of the family, and it has shown to either bring loved ones closer together or tear them apart. Many times, one or two members of the family can feel as though they are taking the brunt of the caregiving work, which can lead to stress and anger between potential caregiving family members. The largest strains often happen between siblings, with 40% of surveyed caregivers feeling as though their efforts were undervalued by another family member. On the other hand, 35% of caregivers reported the strengthening of family ties due to a shared caregiving experience and 81% reported that family support was a source of strength while caregiving.
The Financial Toll
Since very few people prepare for Alzheimer’s to potentially enter their loved one’s life, the financial burden can be just as taxing as the emotional one. The lack of preparation often comes from the belief that Medicare or insurance will cover the cost of care, but rarely, if ever, does it cover all of it. Many families simply cannot afford the costs of caring for a loved one with Alzheimer’s and thus, have to make important life choices in order to provide the best care.
Overcoming the Challenges
While the toll of Alzheimer’s caregiving may be daunting, there are ways to overcome the challenges and put yourself as a caregiver in the best position possible to benefit not only your loved one but yourself. It is important to remember that your health and wellbeing is just as important as the loved one you are caring for. Staying positive and being prepared are key ways to succeed as a caregiver.
- Research and learn: There are plenty of ways to be proactive when it comes to Alzheimer’s caregiving. The Internet has some wonderful resources, including tips, reports and facts provided by the Alzheimer’s association. Talk with doctors and friends who have been caregivers in the past or those who are currently caregivers — they will be a great resource as well.
- Listen to the ones you love: When caring for a loved one with Alzheimer’s, it is important to let everyone who cares for them speak and have a role. You may not always agree, but it is important to be respectful and listen. This can help foster an environment of understanding. When family members feel as though they are a part of the process, they are more likely to help when needed.
- Make a list: Make a list of responsibilities needed to provide care for your loved one. The list should include both care-related and everyday tasks, as well as a list of the bills that need to be paid. Ask other family members and loved ones for help accomplishing what is on the list, dividing tasks according to different family members’ abilities.
- Find support: Connect with other caregivers of loved ones suffering from Alzheimer’s. Speak with friends and family members who may know someone going through the same things as you, but there are also many support groups online. Bonding over these shared experiences can help relieve stress.
- Consider alternative care: If the burden of caregiving is too much, consider hiring an at-home caregiving aide or consider moving your loved one into an assisted living community. Often, the added care and peace of mind of an assisted living community can benefit both yourself and your loved one.