Alzheimer’s Disease: A Comprehensive Guide for Families and Caregivers

Caring for a loved one with Alzheimer’s Disease poses many potential challenges for families and caregivers. The demands of daily care, changes in family roles, and decisions about your loved ones future can place a high physical, emotional, and financial toll on you and your family. It can be difficult to comprehend the physical, mental, and emotional changes associated with this disease, so taking advantage of the many resources available to caregivers is essential.

What is Alzheimer’s Disease?

Alzheimer’s Disease is the most common form of dementia, which is defined as a chronic or persistent disorder that affects memory and other intellectual abilities enough to cause a disruption to an individuals daily life. Symptoms of Alzheimer’s Disease include issues with memory, thinking, and behavior which slowly progress over time until the person is no longer able to function independently. The Alzheimer’s Association (alz.org) estimates nearly 1 in 3 seniors are currently living with Alzheimer’s and related dementia. It is the 6th leading cause of death in the United States. Currently, there is no known cure, however there are several treatments available to reduce symptoms as well as continuing research to slow it’s progression. 

Source: www.alz.org

The Caregiver Role
The demands placed on individuals responsible for caring for family members diagnosed with Alzheimer’s disease are significant. This type of care is physically, emotionally, and mentally demanding. The role of caregiver can be time-consuming as nearly 1 in 4 caregivers are required to provide “constant care”—committing 40 or more hours per week to caregiving— which may impact work and family life.

When caring for someone with Alzheimer’s Disease, caregivers are often required to provide personal care such as bathing, feeding, dressing, and assisting with incontinence issues. This is not an easy task as many individuals with Alzheimer’s are noncompliant due to feelings of confusion and disorientation. They are typically unable to assist even in the most basic activities of daily living so the responsibility falls solely on the caregiver.

Caregivers of individuals diagnosed with Alzheimer’s Disease often face unique challenges as well due to their loved one’s cognitive impairment. Responsibilities such as taking on financial management, medication management and household chores are all added items to the caregiver’s plate.

When combined, it is clear that these newfound responsibilities placed on you as a caregiver may lead to feelings of stress and caregiver burden.

Recognizing Symptoms of Caregiver Burden
High levels of stress are frequently reported by Alzheimer’s caregivers. The following is a look at some of the possible symptoms:

  • Denial about the diagnosis and the effect it will on the relative in the upcoming years. Thinking they will get “better”
  • Anger directed towards the person you are caring for and frustration when they are unable to do activities they once were able to
  • Social withdrawal from friends and family that you once enjoyed
  • Anxiety about your loved ones future and fear that you will not be able to continue caring for them
  • Depression that affects your ability to cope. Thinking “I just don’t care anymore”
  • Exhaustion inability to complete daily tasks because you’ve become to tired
  • Sleeplessness sometimes caused by a never-ending to do list and concerns.
  • Irritability causing you to respond to your loved one negatively
  • Lack of concentration forgetfulness and inability to complete tasks
  • Health problems from the  physical and mental exhaustion

In this video, families discuss the transition from spouse, child, sibling or other relative to caregiver of someone with Alzheimer’s Disease and various ways they cope with stress associated with their new role.

What you can do…
One of the most important things you can do as a caregiver is to take care of yourself. While you may be busy caring for your loved one with Alzheimer’s Disease, it’s important to recognize the impact this role has on your own emotional, physical and mental health. Be aware of feelings of frustration, confusion, anger and sadness that may occur and recognize these feelings are normal. Taking action to address your own mental health will only increase your ability to be the best version of yourself while caring for your loved one.

Always remember, it is okay to ask for help whether it’s from other family members, use of adult day services, or involving a home health care agency, if caregiving becomes too much to handle alone be sure to reach out. Utilizing these resources will not only bring you relief, but may prevent any illness or depression associated with caregiver burden.

Additional ways to take care of yourself

  • Ask family and friends to help you in specific ways (ex: taking the person with Alzheimer’s out for a few hours, making a meal, help with cleaning around the house etc)
  • Join an Alzheimer’s caregiver support group—available online or in person
  • Maintain your hobbies and interests
  • Get plenty of exercise
  • Spend time with friends
  • Utilize relaxation techniques (visualization, meditation, breathing exercises)

The following video is an inspiring story of a woman who took on the role as caregiver to five of her relatives who had been diagnosed with Alzheimer’s Disease. Her story focuses on the positive impact this experience had on her life over the two decades she spent caring for her mother, aunts, and uncles. She recognizes the extreme sacrifices that are required to care for individuals with this disease, but with the right outlook, it can be one of the greatest experiences in your life.

It is important to remember caring for someone with Alzheimer’s Disease is a balancing act. In your role as caregiver, continue to do what you can to provide the best possible care for your loved one while maintaining your own personal well-being. Never hesitate to seek out help and support when you need it.


References:

Alzheimer’s Association and National Alliance for Caregiving. (2004). Families Care: Alzheimer’s Caregiving in the United States. Retrieved from https://www.alz.org/national/documents/report_familiescare.pdf

Alzheimer’s Disease Education and Referral (ADEAR). (2012, July). Alzheimer’s Caregiving Tips: Caring for Yourself. Retrieved from https://d2cauhfh6h4x0p.cloudfront.net/s3fs-public/alzheimers-caregiving-tips-caring-for-yourself.pdf?iCQFtawlui3WyrwaovX3INYen2_XCSrw

Mendiola-Precoma, J., Berumen, L. C., Padilla, K., & Garcia-Alcocer, G. (2016). Therapies for Prevention and Treatment of Alzheimer’s Disease. Biomed Research International, http:// library.neit.edu:2216/ehost/detail/detail?vid=6&sid=eb3ab4ba- fa34-43e2-8328-6aba78159cb4%40sessionmgr4008&hid=4106&bdata= JnNpdGU9ZWhvc3QtbGl2ZQ%3d%3d#db=ccm&AN=117065533

Mittelman, M. (2004, May). Sustained Benefit of Supportive Intervention for Depressive Symptoms in Caregivers of Patients With Alzheimer’s Disease. Retrieved from http:// ajp.psychiatryonline.org/doi/pdf/10.1176/appi.ajp.161.5.850

Leave a Reply

Your email address will not be published. Required fields are marked *