There are approximately 15 million unpaid family caregivers in the United States caring for a loved one with Alzheimer’s disease or dementia. While it’s no secret that caregiving can take an emotional, financial and physical toll, not much progress has been made when it comes to alleviating the caregiving burden.
Recently, researchers examined what is causing Alzheimer’s caregiver stress in a study, finding that many caregivers struggled with aggressive behaviors of parents and senior loved ones and dealing with the impact of the disease. Read more about the study and what is being done to relieve the Alzheimer’s caregiver burden in the U.S.
The Biggest Alzheimer’s Caregiver Challenges
The Center to Advance Palliative Care (CAPC) and the Gary and Mary West Health Institute (WHI) teamed up to conduct four in-person focus groups and a survey of over 500 caregivers to understand more about the biggest caregiving challenges and most challenging behaviors exhibited by their loved ones with Alzheimer’s.
From their research, they found that the most challenging Alzheimer’s behaviors were:
- Agitation or aggression (25%)
- Repetitive speech or actions (12%)
- Wandering or restlessness (10%)
- Incontinence or constipation (10%)
- Late-day confusion (8%)
- Sleeplessness (6%)
- Refusal to eat (5%)
- Paranoia (5%)
- Refusal to take medicine (4%)
- Hallucinations (5%)
- Refusal to bathe (4%)
- Choking on food or liquids (4%)
Respondents identified their biggest Alzheimer’s caregiver challenges as:
- Dealing with memory loss and impact of the disease on your loved one (25%)
- Handling the stress and emotional toll on self (16%)
- Having patience with your loved one (15%)
- Handling loved one’s mood swings or behavior changes (12%)
- Daily activities (11%)
- Keeping loved one positive and motivated (8%)
- Bills, finances, health insurance (4%)
- Managing and administering medications (3%)
- Speaking with loved one’s health care providers (2%)
- Scheduling appointments and time management (1%)
Ways to Alleviate the Alzheimer’s Caregiver Burden
Understanding the behaviors and challenges facing Alzheimer’s caregivers is the first step for health care providers to alleviate the caregiving burden.
From these results, medical professionals can recommend regular assessments of Alzheimer’s caregivers’ emotional health and access to support groups and counseling that can help caregivers cope with the more difficult aspects of caregiving. Additionally, understanding which behaviors are most challenging for caregivers can help advocacy groups provide education and resources for these exact behaviors.
Comprehensive care for people with Alzheimer’s and their caregivers still has a long way to go. Millions of people are struggling with the weight of caring for a parent or senior loved one who has a disease that is untreatable, leaving caregivers exhausted and overwhelmed.
This study is a great first step in creating best practices for Alzheimer’s caregivers, helping caregivers and those they love at the same time.
Are you an Alzheimer’s caregiver? What is the hardest part of caregiving for you? We’d like to hear more about your experiences in the comments below.