Family caregivers of loved ones with dementia face a difficult situation. Often, symptoms in their loved ones mount slowly, and the role of caregiver sneaks up on them without them realizing it. They aren’t trained or prepared for the task they’re undertaking.
Although caring for a loved one can be rewarding, it is undisputedly hard. The burden of care takes a toll on caregivers, and the progression of the disease takes a toll on their loved ones. Each of those situations presents challenges. We’ll take a look at the common ones in each.
The Toll on Caregivers
1. Objective and Subjective Burden
Objective burden is a measure of the physical demands that caregiving puts on a caregiver. It refers to the number of hours worked (typically nine hours per day), the degree of assistance provided, the frequency of that assistance, etc.
Subjective burden is the perception by the caregiver of the degree to which that work is affecting them physically and emotionally. All caregivers face some level of objective and subjective burden, and that burden tends to grow over time.
2. Psychological Morbidity
This alarming term simply refers to the declines in mental health that caregivers often face. Caregiving for loved ones with dementia is associated with increased rates of depression and anxiety.
3. Social Isolation
The job of caregiving for a loved one with dementia can become all-consuming. When the role consumes more than half of a caregiver’s waking hours, it can become difficult to find the time or energy for an active social life, which makes psychological morbidity even more likely.
4. Physical Morbidity
This refers to health declines experienced by caregivers, such as increased rates of cardiovascular disease and chronic conditions such as diabetes and ulcers.
5. Financial Strain
Seventy percent of the lifetime cost of caring for someone with dementia is paid by families, according to a 2018 report by the Alzheimer’s Association. That is one of the reasons why, according to the same report, family caregivers of loved ones with dementia are twice as likely to report substantial emotional, physical, and financial challenges than caregivers of people without dementia.
The Toll on Care Receivers
The reason that burden grows over time for caregivers is that dementia is a progressive disease. It does not get better. It attacks the brain, destroying memory, cognition, the ability to communicate, as well as physical ability. This results in a set of common behaviors by people with dementia that caregivers should be prepared to face.
6. Wandering
The urge to wander is common in people with dementia, and it is a stressful behavior for caregivers who lose track of their loved ones. The urge to roam can come from a host of things — avoidance of a stressful environment, searching for a missing item, looking for food or a bathroom, ingrained behavior patterns such as going to work, or even just boredom.
7. Incontinence
In the later stages of dementia, people forget how to recognize the urge to clear their bladder or bowels. They forget where the bathroom is, or their hands no longer have the dexterity to remove their garments, so they can use the restroom.
8. Agitation
A person with dementia might become agitated for a number of immediate reasons, but they all ultimately stem from their disease, which robs them of the ability to process new information. As a result, a change in surroundings — moving to a new home, going on a trip, even having visitors — become anxiety-provoking events.
9. Repetitive Speech
This is a symptom of memory decline. Because the brain’s ability to form new memories is impaired, people with dementia forget that they’ve just told you a favorite childhood memory, asked you the time, or used a favorite word in each of their last dozen sentences.
10. Paranoia
By the mid-to late stages of dementia, the brain’s ability to make sense of the world around it has deteriorated to the point that many people with dementia become paranoid and delusional. Common delusions are that their loved ones are stealing from them, which explains why they can’t find their belongings. The police are after them, which explains their anxiety. It can be difficult for family caregivers, who have sacrificed so much, to be the object of such accusations.
Learning to Cope
Caregiving presents a mental, physical, and financial test that should be respected. The challenges it poses are real, but caregivers who have proper emotional support, physical support, and information can go a long way toward mitigating those challenges.
Research shows that caregivers who take the time to learn about caregiving as a skill improve their own well-being and that of their loved ones.
Although this Caregiving for a Parent with Dementia at Home eBook might not answer every single question you have about caregiving for someone with Alzheimer’s or other forms of dementia, it will help determine the next steps now that you have the diagnosis in hand. You’ll learn about the various documents you should have in place after diagnosis (if you don’t already), resources for caregivers (regardless of how much support you provide), self-care tips, and long-term care considerations.
