June 2010
The Case Managers role with Alzheimer’s Disease.
The role of case management becomes broader when the disease process involves cognitive decline such as Alzheimer’s disease. It is important that the case manager understand the symbiotic relationship of the caregiver and the patient with Alzheimer’s disease. The caregiver is coping with chronic mental and physical stress that may seriously impact the health of the caregiver if the caregiver does not recognize and manage their stress.
The following checklist includes symptoms of stress for the caregivers of a person with Alzheimer’s disease. It is followed by a list of suggestions of how to manage stress. Respite care is an underutilized resource for caregivers to support taking a break from the caregiving role and to facilitate the person with Alzheimer’s remaining in the community.
Caregiver Stress Checklist
Have you had these symptoms lately?
- Denial
- Anger
- Social Withdrawal
- Depression
- Exhaustion
- Sleeplessness
- Irritability
- Lack of Concentration
- Health Problems
10 Important Ways to Manage Stress
- Know what resources are available
- Become an educated caregiver
- Get Help
- Take care of yourself
- Manage your stress level
- Accept changes as they occur
- Do legal and financial planning
- Be realistic
- Give yourself credit not guilt
- Visit your doctor regularly
Respite care provides the caregiver a temporary break from daily caregiver responsibilities. Using respite services can support and strengthen the caregiver’s ability to continue taking care of the person with Alzheimer's in the home.
Types of respite care services
In-home care services
- Companion services provide the individual with dementia company and help supervise activities.
- Personal care or home health aide services assist with bathing,
dressing, toileting and exercising.
- Homemaker or maid services help with laundry, shopping, and preparing meals. skilled care services help with medication and other medical services.
- Adult day center is a safe environment where the person with Alzheimer’s can be socialize. Staff led planned group activities, transportation and meals are often provided as part of the daily routine.
Resources for Respite & Managing Caregiver Stress
- Contact your local Alzheimer's Association. They can help you determine what respite services you need and provide referrals in your area. Find my local Alzheimer's Association
- Contact the Eldercare Locator to connect with your local Area Agency on Aging. The locator service can also help you identify local respite care services. Call 1.800.6771116 or visit http://www.eldercare.gov/.
- Search for respite care services by state or service at the National Respite Care Locator Web site at http://www.respitelocator.org/.
- Check with your religious organization. Many churches and temples offer respite care services for community members.
- Consider asking or hiring a friend or neighbor to spend time with your loved one while you take a break.
New and Updated Alzheimer’s Resource Lists Address Caregiving, Intimacy, Vascular Dementia, and More
Coping with behavior problems. Facing changes in intimate relationships. Choosing a long-term care facility. These are among the many issues family and professional caregivers of people with Alzheimer’s disease confront daily. The Alzheimer’s Disease Education and Referral (ADEAR) Center now offers eight online resource lists to inform and support caregivers.
The newest list for caregivers offers resources about changes in intimacy and sexuality, an often overlooked challenge for spouses, partners, and professional caregivers of people with Alzheimer’s. Also new is a list of resources about vascular dementia, the second most common type of dementia in older adults, after Alzheimer’s.
The two new lists join a series of ADEAR resource lists of free and low-cost books, booklets, DVDs, Web sites, and other materials:
More resources on Alzheimer’s disease can be found in ADEAR’s Alzheimer’s Disease Library or on the ADEAR Center website: www.nia.nih.gov/Alzheimers.
Alzheimer's Disease Education and Referral Center
A Service of the National Institute on Aging
PO Box 8250, Silver Spring, MD 20907-8250
Phone: 800-438-4380 (toll-free) | E-mail: adear@nia.nih.gov
 A Family's Journey with Alzheimer's
Submitted by Cathy Lodico, RN, MS, CCM, CMSNE Social Initiative Committee
Ten years ago, my father called to tell me he was diagnosed with Alzheimer’s disease. With five other children, the task must have been a daunting one. He felt he needed to speak to each of us personally. Hearing the news from him was a tribute to his character and his dedication to sharing personally with his children. I told him I could not accept it and he said if he could, I could too. The realization of those words changed my self centered focus.
The disease progressed slowly due to the medications and Daddy’s spirit to carry on. He did anything he could to accept and work with the new diagnosis. His new mantra was, “I couldn’t do it without your mother”. That was true and for the longest time my mother kept his diagnosis a secret. This lasted until people started asking what was the matter with John. He had no problem sharing. He let people know why he was slower and struggled with word choice. Dad also had a double whammy of a Parkinsonism diagnosis, which impacted his mobility.
My parents traveled to Ireland the first year and took bus trips for as long as my Dad could do it. Denial was my Mom’s coping method and it worked well for her throughout the disease. She sheltered my Dad and protected him from whatever she could. Dad had a spiritual depth that has helped him in the journey and my parents had a new appreciation of each other.
My family has grown and fortunately navigated through the process armed with helpful information. Our goal has been to do whatever we could to help my parents and each other. Each person has their own personal journey. Reading and becoming involved with the Alzheimer’s Association was extremely helpful for my siblings and mother. Discovering each person’s role in the family helped too. One of my brothers ended up being the person able to make some difficult things happen. Each of us definitely has a role and we all work together. We have had many happy times. It helps to focus on what we can do and not on what we cannot.
After nine years, my father’s needs are beyond what my mother can provide at home. He now has an extended family to meet his needs in a nursing home in New York. Dad still knows us and is able to make most of his needs known. Having caregivers who know my father and continue to assist him in his journey is comforting to our family. My mother visits five times a week and continues with her support group. She has learned through her journey that it is just as important for her to take care of herself.
As hard as it is to accept this, it is easier knowing everything that my mother and siblings could do was done. As my Dad told me in the beginning, I have to accept it. Looking back on the last decade, there are no regrets and fortunately the end of my Dad’s life is one filled with understanding, laughter and the dignity he deserves.
It is wonderful to see that an organization such as CMSNE has made Alzheimer’s disease as the social initiative. Knowing that others will have increased knowledge and education, which I had to learn by myself along my personal journey, is encouraging for the many that are yet to travel this path.
The Alzheimer's Association provides resources for families seeking guidance in finding care providers and residences in your area. Click here to visit the their resource page.
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For the last few years CMSNE has selected a cause for a Social Initiative to support and education our membership about. For 2010 we have identified Alzheimer’s disease as our social initiative. Over the next year CMSNE in conjunction with local state Alzheimer’s Associations and sponsors we will be providing you with educational information in the form of articles in our newsletter, presentations in your area, exhibiting at our conferences and a dedicated web page on our website. We hope that you will find this information helpful and educational. To jumpstart this initiative we are providing you with an overview of Alzheimer’s disease and some facts and myths associated with the disease.
Alzheimer’s disease is a brain disorder named for German physician Alois Alzheimer, who first described it in 1906. Scientists have learned a great deal about Alzheimer’s disease in the century since Dr. Alzheimer first drew attention to it. Today we know that Alzheimer’s:
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Is a progressive and fatal brain disease. As many as 5.3 million Americans are living with Alzheimer’s disease. Alzheimer's destroys brain cells, causing memory loss and problems with thinking and behavior severe enough to affect work, lifelong hobbies or social life. Alzheimer’s gets worse over time, and it is fatal. Today it is the seventh-leading cause of death in the United States. Learn more: Warning Signs and Stages of Alzheimer’s Disease.
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Is the most common form of dementia, a general term for memory loss and other intellectual abilities serious enough to interfere with daily life. Alzheimer’s disease accounts for 50 to 70 percent of dementia cases. Other types of dementia include vascular dementia, mixed dementia, dementia with Lewy bodies and frontotemporal dementia. Learn more: Related Dementias.
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Has no current cure. But treatments for symptoms, combined with the right services and support, can make life better for the millions of Americans living with Alzheimer’s. There is an accelerating worldwide effort under way to find better ways to treat the disease, delay its onset, or prevent it from developing. Learn more about recent progress in Alzheimer research funded by the Alzheimer’s Association in the Research section.
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