Top Problems Caregivers Face from our Alzheimers Caregiver Forum
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- The Worst Problem Faced by Family Caregivers of People with Dementia is the Aftermath of the Disease
- Aggression Impacts 1 in 4 Caregivers of Family Members with Dementia
- 16% of Members Struggle Handling the Emotional Toll of Caregiving for a Family Member with Dementia
- Challenging Behaviors Top the List of Difficulties Faced by Caregivers
- Agitation and Confusion Lead to Struggles for Everyone
- Family Caregivers Manage Countless Issues
- Author Bio
We've asked our Alzheimer's caregiver forum members what the most pressing issues they face daily as caregivers of family members with dementia. Our members responded with many Alzheimer's caregiver stories, giving insight into the challenges they struggle with the most.
We've compiled all of the submissions from our Alzheimer's caregiver support forum, and discovered the most troublesome issues facing family caregivers today.
The Worst Problem Faced by Family Caregivers of People with Dementia is the Aftermath of the Disease
Of all the caregiver stories we've read on our dementia caregivers support forum, one strong underlying theme seems to connect them all. The impact of a dementia or Alzheimer's disease diagnosis is catastrophic for the person on the receiving end. Not only does such a diagnosis tend to cause a wave of challenging emotions, but there is also an immediate financial impact in the form of medical expenses.
The aftermath of being diagnosed with a life-altering disease such as dementia can ripple through the family. Family caregivers are usually most affected, facing interpersonal and real-life problems like resentment, guilt, and the financial burden of healthcare costs (26% of family caregivers have routine out-of-pocket expenses, averaging over $7,000 annually). Read on to learn more about these and other difficulties faced by caregivers in our support forum.
Aggression Impacts 1 in 4 Caregivers of Family Members with Dementia
One of the most widely reported impacts of Alzheimer's disease and dementia on family caregivers is dealing with memory loss and other effects of the disease on their loved ones, including aggression. When your generally lucid loved one turns violent and displays threatening behavior towards you, whether it's due to a random spell or not, it can have dramatic effects on your own well-being. According to our dementia family caregiver forum, 25% of family caregivers reported their loved ones experienced heightened aggression or agitation.
Examples of aggression range from verbal abuse to outright physical assault. Often, these aggressive periods dissolve as quickly as they materialize, though they can sometimes last until bedtime. Patterns of aggressive behavior may also emerge. It's important to try to uncover the cause behind the agitation because it could be a sign that your loved one is suffering from:
- Pain, either from an old injury, a new injury, or a worsening health issue
- Not enough sleep or having inconsistent rest, which is common, with 6% of our support forum caregivers struggling with sleeplessness in their loved ones
- A change in routine or simply being overwhelmed by the amount of people/sounds/activities going on around them
- Side effects of medication or medication interactions
A few strategies for dealing with dementia-related aggression include taking a break and spending some time listening to music. Completing a soothing activity or task with your loved one may also be helpful. In addition, you may benefit from taking a break from caregiving and signing up for a respite day program. Reaching out to family for help is another option. Self-care is critical when you're responsible for the care of another person— after all, who will take care of them if you are unwell?
16% of Members Struggle Handling the Emotional Toll of Caregiving for a Family Member with Dementia
A recent study shows that in some cases, family caregivers can experience worse stress and anxiety symptoms than the people they are caring for. This could be due to the strain of grieving while your loved one is still alive, as they slowly lose their identity. It could also be emotionally challenging to handle the vast amount of responsibilities family caregivers' vast responsibilities, and take time to care for yourself.
Challenging Behaviors Top the List of Difficulties Faced by Caregivers
One of the more disturbing aspects of being a family caregiver for someone with dementia is witnessing them experience their journey through the stages of the disease. The nature of dementia involves the deterioration of the brain, essentially changing the overall shape and function of the organ. This, in turn, can shift long-set habits and cause a cacophony of taxing and often disturbing behaviors.
Changing Behaviors Reported by Family Caregivers
Amongst the numerous caregiver stories submitted to our forum, there was a wide range of interesting behaviors their loved ones had begun acting out. For example:
- 12% of caregivers reported their loved ones had begun saying or doing the same things repeatedly, seemingly forgetting they had just done or said the same thing
- 8% of family members with dementia experienced late-day confusion
- Paranoia affected 5% of loved ones with Alzheimer's disease or other dementia, and 5% of stories tell of family members with dementia experiencing hallucinations
- 4% of users say their loved one routinely refuses to bathe
- Wandering is common in dementia, with 10% of caregivers needing to take extra steps each day to prevent unsafe wandering
Agitation and Confusion Lead to Struggles for Everyone
Alzheimer's disease causes progressive damage to the brain as time goes on. This breaking down of brain cells is responsible for memory loss and leads to confusion. This becomes more pronounced during the middle stages of the disease, but memory loss and mild confusion are symptoms that often occur early on.
Many people first become aware of the possibility that they have Alzheimer's disease or a related dementia when it becomes evident to them that their memory is "going." In fact, it's only during the 21st century that we've been able to diagnose Alzheimer's disease before a person passes away and has an autopsy. Now, we can perform a litany of biological tests to search for markers that lead to an accurate diagnosis.
While the science of dementia is still in its early stages, we can see more clearly when we're at risk for dementia and can take steps to prolong our cognition. However, as it stands, the clear hallmarks of the disease are confusion and memory loss.
As caregivers of family members with dementia, we are painfully aware of the fact that our once-dynamic loved one is struggling to preserve their own cognizance. Apart from being empathic to their loss of memories and ability to care for themselves, the reality of our possible future can be haunting and emotionally burdensome in its own right. In fact, 16% of family caregivers report difficulty handling the stress and toll on the self.
Managing your older loved ones' failing health and cognition can cause intense feelings and new trains of thought. It can be uncanny to watch your loved ones, whom you've grown to know and love for years, slowly (or rapidly) undergo a dramatic shift in behavior. It's perfectly normal for a family caregiver to experience feelings of resentment towards their loved one and guilt and depression for having negative feelings about said loved one.
Family Caregivers Manage Countless Issues
While the previous concerns were among the most widely reported as impactful by members of our Alzheimer's caregiver blog, there are many more issues faced by caregivers every day. For example, caregivers in our forums stated they experienced:
- Depression, anxiety, loneliness, and exhaustion
- Difficulty managing behavioral problems, such as inappropriate behavior, wandering, and emotional outbursts
- An exuberant amount of stress from the physical and emotional demands of caregivers for a family member with dementia
- And the list goes on…
On top of the emotional and financial burden of being a family caregiver for someone with dementia, a list of medical items needs to be addressed. While each person with dementia experiences different symptoms at different stages, a few stand out as common and incredibly challenging.
For example, constipation and incontinence top the charts of medical issues that family caregivers help with. The discomfort and downright pain of constipation are enough to cause anyone to be irritable, and this is made much worse when that person is also suffering from dementia. As well as managing the physical symptoms and emotional consequences, family caregivers must often source over-the-counter medications.
Furthermore, 4% of the caregiver stories in our forum tell about their loved ones losing the ability to swallow and choking on their food. As the disease progresses, it can affect the part of the brain that controls the swallow reflex. As a result, caregivers often find themselves taking a few extra steps to process meals down either into very small pieces, or a puree.
As if the stress of managing a medication schedule and the associated costs isn't enough, 4% of stories from our family caregiver forum tell us their loved ones with dementia refuse to take their medications. This has obvious safety implications, and can lead to a worsened strain on your dynamics and relationship. A high number of caregivers also described their family members refusing to eat anything, making their health problems intensify quickly.
Aside from the physical reality of worsening health issues, the financial burden is further exacerbated with each new symptom. Among some of the reasons that caregivers have to pay for care out of pocket include to pay for OTC medications, gas, and other expenses to get to doctors' appointments, and time missed off of our regular working hours. And that isn't counting the deserved wages that family caregivers don't see. Studies show that in 2021 alone, family caregivers provided over $600 billion in unpaid care.
There are two factors to the social isolation component family caregivers experience. Firstly, people with dementia ultimately lose their previously held communication abilities. Many caregiver blog stories involve being unable to understand or be understood by their family member with dementia.
Seek Caregiver Support
Facing numerous challenges, including managing the patient's behavioral issues, dealing with the emotional impact of the disease, and maintaining their own physical and mental well-being, caregivers are at risk in their own right. It is crucial for caregivers to seek help and support to alleviate the caregiving burden and ensure the best possible care.
Dr. Logan DuBose is a Resident Physician in Internal Medicine at George Washington University Hospital and co-founder of Olera, Inc. He writes about dementia, Alzheimer's, and other age-related conditions. He is a Texas A&M MD/MBA alum. Olera specializes in merging clinical practice with innovative solutions for the aging population.
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