Why Is Dementia Caregiving So Difficult?
The routine tasks involved in dementia caregiving can overburden the caregiver. Cleaning up, bathing, preparing meals, etc may seem manageable during the initial stages of dementia, but things only get harder as the condition progresses (to middle and later stages).
Why is dementia caregiving so difficult? What makes it one of the most challenging jobs?
There’s no one answer to this question. And several elements make dementia caregiving a daunting task, especially for someone with no background in nursing.
A dementia caregiver has to figure out every aspect of the condition on their own. Doctors can help diagnose the condition, prescribe medications, and perform other medical-related duties, but it is the caregiver who is left with a person who is increasingly getting temperamental, disoriented, and forgetful.
Keep in mind that I am talking in the context of family caregiving. A family caregiver could be an adult child, spouse, sibling, or a close relative (living in the same house) of a dementia affected person.
Do dementia caregivers suffer from burnout?
In a 2020 survey done by the American Association of Retired Persons (AARP), it was reported that 23 percent of caregivers find it difficult to take care of their own health. Further, the same percentage of the caregivers have made their own health worse, since they began their caregiver journey.
Not to mention, there could be an overlap of caregivers who struggle to care for themselves and have made their life difficult. AARP does not provide further clarification on the subject.
Moreover, caregivers continue to self-report of decline in their health. Although the data provided by AARP includes caregivers offering care to all seniors (not just dementia-affected folk), the situation is still concerning.
Dementia-affected seniors need more care compared to healthy seniors in their 80s and 90s. Naturally, there are more dementia caregivers than general caregivers. And a majority of them suffer from caregiver burnout.
Behavioral issues in dementia patients make caregiving hard
Caregiving is not just about helping out the elderly with activities of daily living. As the condition progresses, the person with dementia begins to show symptoms that may seem puzzling to a newbie caregiver.
The family member that they have known for years begins to act, move, and behave in strange ways, which is deeply hurtful to a family caregiver. Note that the number of symptoms varies from person to person. The more intense the symptoms, the harder it is for the caregiver to offer care.
A study by the University of Basel confirms that about 30 to 90 percent of persons with dementia suffer from behavioral disorders. They feel depressed, get suspicious, project their anger, or act in socially inappropriate ways. All of which makes caring for them an arduous job.
Furthermore, not all persons with dementia show the same symptoms. The caregiver has to come up with personalized solutions to the problems faced by their loved one. A lot of trial and error is needed. Sometimes things don’t work out and the caregiver ends up frustrated.
Work-life balance takes a massive hit
An average American works 34.4 hours per week, says a report by Zippia. After work, a married woman spends a minimum n of an hour doing household chores or taking care of the children. The lives of people who juggle caring for an older family member and employment are indeed stressful.
The burden of family obligations can also force a caregiver to turn down promotions. Some change careers and opt for a less demanding job. It is also common for caregivers to arrive late at work and leave early, which makes keeping the job even more difficult.
Not to mention, the work-life balance of a caregiver takes a massive hit. Without a proper support system, they are left feeling lonely and isolated. Making friends can also be challenging. The caregiver gets stuck with the person they are caring for.
Summary
Why is dementia caregiving so difficult? Caregiving is about self-sacrifice. The job of a family caregiver gets harder with time. They discover new problems as the condition progresses. The day in the life of a caregiver is seldom easy.
Having said that, a caregiver can manage to perform both caregiver and non-caregiving-related duties well. All they need is proper guidance from the nurse in charge, support from family members, and camaraderie of friends.
