Study Identifies Biggest Alzheimer’s Caregiver Challenges

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.Study Identifies Biggest Alzheimer’s Caregiver Challenges

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.

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Please leave your thoughts and comments

  • Residential Care Homes in East

    This blog help to alleviate the Alzheimer caregiver burden and understand level of maturity of a caregiver.

  • Lisa

    We just moved Mom in. Dr’s want her drinking more fluids for her constipation, but this is causing urine incontinence. Gentle reminders are not well received, any suggestions?

  • Tedster05

    My wife dementia has greatly reduced her ability to clearly communicate – both recieving and sending. She struggles for words, and when finding some, they don’t necessarily make sense. To make matters worse she is reverting more and more to her native tongue of German. Despite all the time I spend on line trying to learn more German even when I understand the words, they don’t necessarily make sense. But, the saddest part of all is she basically has very few memories of the 45 years we have been married. When you get old, you want to bask in your memories and this damned disease kills that hope. Best wishes to all fellow caregivers.

  • Candy

    One of my hardest tasks as his caregiver is finding things for him to do while I try to get done things I must do. He wants to help me but sadly there seems little he can actually accomplish. I want him to be as happy and content as possible. I have tried, puzzles, TV, books. Solitaire on the iPad holds his interest for about 15 minutes. I am open to suggestions. He can still bike and walk, just not alone.

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