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The Emotional and Physical Toll of Caring for Family Members with Dementia

After nearly two decades of getting to know families of Alzheimer’s victims, we know the number one emotion felt by family caregivers is guilt. No one wants to turn their loved one over to the care of someone else. But the all-consuming nature of this tragic disease places increasingly severe demands upon caregivers. The reality is that no matter how committed and loving, few families are equipped to endure the physical, emotional and financial strain required to care for someone with this disease.

The most recent studies published by the Alzheimer’s Association show that nearly 16 million Americans provide unpaid care for someone with Alzheimer’s disease or another form of dementia. According to the study, half of these people live in the same household as the person for whom they are caring. They are primarily family members, relatives or friends. Sixty percent of these caregivers are women. More than half of those providing care are aged 55 or older, married, and the primary breadwinners of the household. A quarter of family caregivers live in households with children under 18.

These numbers offer some insights into why the majority of caregivers rate the emotional stress of their efforts as “high” or “very high”, and why approximately one-third demonstrate symptoms of depression. In a household trying to maintain some semblance of normal living, meeting the increasing demands of Alzheimer ’s can have a detrimental effect on the health of family members. 

But caring for someone with Alzheimer’s places other demands on families as well. Fifty-six percent of family caregivers reported an increased financial burden. For caregivers working full or part-time jobs while also caring for someone with the disease, the majority reported having to make major changes to their work schedules. This included going in late, leaving early, or taking unscheduled time off to provide care.

Studies show it takes 78% more time to care for someone with Alzheimer’s than someone who is cognitively intact. A review of typical caregiving tasks can shed light on some of the challenges family members face. Initially tasks will include routine duties associated with activities of daily living such as performing household chores, grocery shopping, preparing meals and providing transportation. Because of their impaired judgment, those with the dis- ease will need help with medications. Caregiving responsibilities will include management of the person’s finances and legal affairs. As the disease progresses, the need for care will become more personal and acute. Caregivers must provide assistance with bathing, dressing, grooming, feeding and use of the toilet or managing incontinence. Changes in behavior will require caregivers to address safety issues, providing supervision to prevent unsafe activities such as wandering off and getting lost, and managing behavioral symptoms of the disease. Ultimately the person with Alzheimer’s may need assistance with mobility, transferring in and out of bed. In the larger scope of care it may become the family members’ responsibility to hire and supervise others to provide care, and to advocate with government agencies and outside service providers.

The overwhelming burden posed by this disease may suggest why over 60% of those caring for a loved one with Alzheimer’s may experience increased mortality and other serious health impacts.

Faced with the disheartening realities, the compassionate family will seek alternatives, not as an act of desperation but out of love and concern for everyone involved. Naturally, their number one priority is finding a sympathetic provider qualified to meet the unique demands of the disease.

Most people with memory disorders, such as Alzheimer’s, need care that is primarily psychological and social in nature, rather than care that is more medically focused. Alzheimer’s patients generally aren’t in need of higher degrees of medical care and attention until the disease has progressed to an advanced stage. Study after study shows that because of their hyper-sensitivity to disorder, their inability to adapt to changes in their surroundings, and their continual need for personal reassurance, people suffering with Alzheimer’s can best be cared for in a facility that offers a “real home” environment that offers individualized care.

In a “residential care” setting like ComfortCare Homes, professional Caregivers can devote more time to doing things with Residents rather than for them. Something which now is nearly universally acknowledged by both government and medical authorities is the absolute necessity to address the physical, psychological, and social needs of Alzheimer’s sufferers. The closer their lifestyle is to the life they had in their own homes, the easier the transition will be.

Residential care can provide a secure, home environment with familiar surroundings and a high ratio of Caregivers to Residents. Such a specialized environment provides the greatest opportunity for individual attention and interaction on the one hand, and the least chance for harm or injury to Residents on the other. Families appreciate the fact that for their loved ones, this type of care is more like a change of address than a change of lifestyle. 

For more information about caring for your loved one with Alzheimer’s, call ComfortCare Homes at 316-685-3322.

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