Alzheimer’s disease (AD) is a neurodegenerative disorder that affects approximately 5.1 million Americans. This disease is the most common cause of dementia in older people. AD is characterized behaviorally by memory loss, language problems, and unpredictable behavior. On a cellular level, it is characterized by amyloid plaque and neurofibrillary tangle formation as well as the loss of neuronal connections in the brain. Alzheimer’s disease is fatal and irreversible. There is currently no cure for Alzheimer’s disease, and medications act to slow the progress of the disease. However, medications for this disease do not work for all patients and may lose effectiveness over time.1
The pre-clinical stage of Alzheimer’s disease includes the formation of amyloid plaques and neurofibrillary tangles in the neocortex of the brain. At this stage, there are no noticeable behavioral symptoms. Neuronal damage will eventually progress to the hippocampus, which is classified as mild Alzheimer’s. Patients will then begin to experience memory loss and cognitive impairment, especially in word-finding, visual/spatial realms, and reasoning and judgement. Alzheimer’s is most commonly diagnosed in this stage. Mild cognitive impairment (MCI) is a disease with similar symptoms to early Alzheimer’s. Some older people experience MCI and progress to a diagnosis of Alzheimer’s disease.1
Ninety-eight percent of patients with AD are diagnosed at age 60 and over. These patients have the late-onset or sporadic form of the disease.1 Black women and men are at a higher risk of developing late-onset Alzheimer’s Disease than white women and men.2 Two percent of AD patients have the early-onset or genetic form of AD, which is usually diagnosed between the ages of 30-60. There is no positive test for Alzheimer’s disease, so therefore AD is diagnosed when the patient’s symptoms cannot be explained by another disease.1
Being a caregiver to a family member with MCI or AD can be distressing and frustrating. Depressive symptoms are common in MCI and AD patients, but 25% of caregivers experience a depressed mood due to the burden of being a caregiver and the lower quality of relationship they have with their family member. If you are a caregiver to someone with MCI or AD, you are not alone. There are shared experiences between different caregivers of this disease. The four common steps taken by caregivers of this disease includes: identifying a problem in the family member’s behavior, a shift in feelings and beliefs about their family member and their world, adapting to their new life as a caregiver, and taking charge of their own needs and care. The four steps will be further explained below.3
A difficulty that arises when a family member has MCI or AD is first identifying the disease. This is difficult as MCI and AD symptoms develop slowly over time. The symptoms of this disease present with short-term memory decline, difficulty engaging in some familiar tasks, behavioral changes, emotional changes, and changes in social activity engagement. People with AD and MCI often react emotionally towards their symptoms: with frustration and anger towards their inability to do tasks, with embarrassment when not being able to follow a conversation, or with depression when forgetting.3
Once caregivers have identified there is a problem, it is common for caregivers to experience negative emotions toward the new reality in their life. One common sentiment is missing the intimacy and functional aspects of their relationship. Another common sentiment between caregivers of this disease is the emotional hardship of making changes in their life due to the diagnosis. This could include downsizing their house, their changes in daily routines, financial difficulty, and the lack of understanding from close family and friends. Finally, the last sentiment that caregivers express in this stage includes ‘rollercoaster distress’, or unpredictable periods of heightened emotional distress, such as shock, anger, guilt, anxiety, frustration, sadness, loneliness, helplessness, worry, and uncertainty, as they observe their family member’s functional decline.3
Caregivers then transition to another stage where they begin to more directly accept the changes in their life. They begin to take on the increasing obligation of caregiving to help their family member function for as long as possible. Also, they have decision-making challenges, such as financial and legal decisions. Lastly, they experience the decrease in their own quality of life. Caregivers often experience a decrease in the quality of married life as well as personal life due to increased loneliness.3
Finally, caretakers gradually begin to take charge of the situation by identifying their major needs and concerns and finding optimal solutions to them. Caregivers often identify the need to gain information related to MCI and AD, such as understanding treatments and results. This is most often found by consulting their family member’s doctor. Caregivers find that establishing effective communication skills means minimizing misunderstanding and regaining the trust between them and their family member. Caregivers also want to know how to develop caregiving skills in situations such as: managing their spouse’s emotional distress, assessing their family member’s performance capacity (for driving or financial decision-making skills), making long-term care plans, keeping their family member involved with usual life routines, and dealing with their family member’s behavior.3
Caregivers lastly need to know how to manage emotional stress for their family member and themselves. Caregivers do these using reminder systems, spending time with their family member to build their relationship, giving adequate time for their family member to communicate. Additionally, having a pet for company, moving into a retirement condo to allow more time to focus on their family member, removing unwanted mail so that the family member cannot be financially cheated, and being mindful of ways to manage their own emotional distress and health needs.3
Sources
- Alzheimer’s Disease Fact Sheet. 11-6423; 2011, 1.
- A) Reitz, C.; Naj, A. Watch. Neurol., 2013, 309, 1483. B) Laditka, J.N.; Davis, D.R. Neurobiol. Aging., 2004, 25, S392. C) Morgan, K.; Carrasquillo, M.M. The Genetics of Alzheimer’s Disease: Introduction and Perspective for the Future. Genetic Variants in Alzheimer’s Disease; Springer: New York, 2013; 1.
- Lu, Y.Y.; Haase, J.E. Advances in Alzheimer’s Research, 2014, 2, 414.
By: Celina Sarangi, University of Denver Student