Family Caregivers and What to Expect

The Alzheimer’s Association estimates there are about 4.5 million individuals affected by Alzheimer’s Disease, that number is expected to more than double by 2050, meaning the need for care will continue to rise. Alzheimer’s Disease will turn spouses and or children into care caregivers, and potentially eliminate any and all savings.

The need for continued care has created a senior housing boom in which communities have been specifically designed for those battling diseases such as Alzheimer’s, dementia, or other variations of cognitive decline, often referred to as Memory Care Facilities. However, the costs associated with long term care, and housing within these communities have become too much for many to handle. In 2017, the United States Department of Health and Human Services published a report indicating the average cost of a semi-private room was upwards of $96,000 annually. Many families elect to age in place, and the household members become family caregivers.

Caregiving, typically a role taken on by the spouse of the individual affected by Alzheimer’s disease becomes far more than a full-time position. Although the individual affected by Alzheimer’s Disease will face struggle, the caregivers themselves are put to the test as well.

Family caregivers often have trouble balancing a great deal of concerns including:

1. Time Commitment: A family caregiver living with someone battling Alzheimer’s disease will spend an average of 40 hours a week providing care.
2. Psychological Losses: Cognitive decline often diminishes a once thriving relationship, therefore the caregiver is now faced with more giving as opposed to a balanced relationship.
3. Physical Effort: The risk for falls, and injury increase without proper training.
4. Fatigue and Poor Physical Health: 45% of family caregivers report not getting enough sleep.
5. Social Isolation: Time constraints, and willingness to engage in social activities decline when an increase in care is needed.
6. Family conflict: Troubles arise when one family member is taking on the majority of the caregiving.

As a family caregiver, one believes they must give everything and anything in order to be considered a “good spouse” or to feel they are doing the right thing. Unfortunately, a caregiver who is not taking care of themselves will not be able to give their full effort to their spouse. Ultimately the effects of caregiving take a great toll on the individual. Many are faced with depression, increased anxiety, decreased immune function, insomnia and musculoskeletal problems. Therefore it is just as important, if not more important for a family caregiver to address concerns for himself or herself before addressing concerns of others. If a family is to provide care for their loved one for an extended period of time, the caregiver must ensure their health is optimal, especially if they are going to give the 110% like many choose to do.

Estimates suggest numbers as high as 30% of family caregivers will pass before the person they are caring for. There is debate whether that number may be even greater.

Although there seems to be quite the burden created and a constant battle each day, a family caregiver has the potential to benefit from the situation as well. The typical scenario in which a family caregiver, who lives with the person they are caring for will undoubtedly have their hands full but this also creates responsibility and a sense of fulfillment and purpose in life. Each of which are ideas many strive to determine in their later years. This is also a situation many do not deem ‘ideal’, however when they are fully immersed they find the relationship with their loved one strengthens beyond belief.

All in all, family caregiving becomes more than many imagine. Many also believe, in order to provide for their loved one, they must put their own health to the side, and consider it an after thought on their list of priorities. However, one must consider their own health before giving full effort to a loved one.

A family caregiver should consider the following while providing care to a loved one:

1. Regular visits with a family physician.
2. Attending social support groups for those in a similar situation, such as The Alzheimer’s Support Network here in Naples.
3. Maintain social ties such as local get togethers or regular gatherings within the neighborhood.
4. Find an effective outlet for frustration.
5. Spend time away from the house utilizing respite services, or calling on family for help.
6. Strength, flexibility, and range of motion exercise daily.

If you or a loved one is suffering from Dementia or another condition associated with aging, and your interest in learning more or meeting for a LiveWell Southwest Florida Assessment, please contact us by filling out our short form, or call us directly at (239) 689-9605.

“Problems arise in that one has to find a balance between what people need from you and what you need for yourself”
-Jessye Norman

References and Additional Resources

Bursack, C. B., & C EXPERT Carol Bradley Bursack. (2007, October 18). Thirty Percent of Caregivers Die Before The People They Care For Do. Retrieved from https://www.agingcare.com/discussions/thirty-percent-of-caregivers-die-before-the-people-they-care-for-do-97626.htm

Caregiver Statistics: Demographics. (n.d.). Retrieved from https://www.caregiver.org/caregiver-statistics-demographics

Haggedorn, Timothy. “The Aging Family, Intergenerational Relationships, Caregiving”. Presentation presented at Davis School of Gerontology at the University of Southern California. Los Angeles, CA, July 2018.

Adelman, R. D., Tmanova, L. L., Delgado, D., Dion, S., & Lachs, M. S. (2014). Caregiver burden: a clinical review. Jama, 311(10), 1052-1060.