Impact On Family & Caregivers

November 11, 2022

Impact On Family & Caregivers

An Alzheimer’s diagnosis can be life-changing for patients, family members, and caregivers. I recently provided insights into New Discoveries on Alzheimer’s as well as treatment, early diagnosis, and preventive measures. While this is essential information, it is also vital to understand the impact of an Alzheimer’s diagnosis and its effects on family members and caregivers. This is especially important when caregivers are family members.

Since Alzheimer’s affects day-to-day life, in particular as the disease progresses, a supportive network is really important. Friends, family members, and professionals who provide emotional, and physical support to Alzheimer's patients, face their own challenges.  

Caring for someone with Alzheimer’s can be overwhelming. Therefore, while you are supporting the person with Alzheimer’s, it is actually vital to focus on your own well-being, which includes having a supportive network of your own. If you do not take care of your own health, mental and physical, it may actually harm the health of the “identified patient,” the Alzheimer’s patient, because unintentionally, you won’t be functioning as well as you need to in your role as caregiver. Below, I outline some common emotions, grieving processes, and challenges that may come with an Alzheimer’s diagnosis and offer ways to seek support.

Giving/Receiving The News

Upon receiving an official diagnosis, family members and caregivers of Alzheimer’s patients may experience various emotions, including anger, denial, confusion, and fear. 

According to the New York Times, children of Alzheimer's patients may experience a range of difficult emotions, including fear of a future diagnosis of Alzheimer’s themselves. The article gives a first-hand account of the many dynamics that arise and challenges that may come with a diagnosis, particularly for children of an Alzheimer’s patient. They stress that part of dealing with fear is “...accepting [that] a certain powerlessness and lack of control exists,” and that engaging in the life you have now is essential. There are two types of genes which influence whether an individual develops a disease:

  • Risk genes 
  • Determinist genes

In fact, genetically, only 1% of Alzheimer's cases are caused by deterministic genes (genes that cause a disease, rather than increase the risk of developing a disease).

Denial & Anger

Learning of the diagnosis is emotionally triggering for many, resulting in anger and denial, which are two of the stages of grief. This life-changing diagnosis can be confusing and overwhelming, especially for family members and caregivers.

The Next Steps

In many situations, professional help can offer immense support, especially when it comes to processing difficult emotions associated with grief. Giving or receiving the news of an official diagnosis can be difficult, but these are not challenges you have to face alone. 

Professional help can come in many forms and may include:

  • Seeking help from a licensed therapist
  • Finding local or online support groups 
  • Exploring educational programs
  • Engaging in online communities and message boards 
  • Connecting with local chapters of the Alzheimer’s Association

The Alzheimer’s Association stresses the importance of caring for your own health as a caregiver. They also provide substantial community resources which allow caregivers to stay informed and connected throughout the various stages of Alzheimer’s.

The Process for Caregivers

From an official diagnosis to the various stages of the disease, an Alzheimer’s diagnosis involves a long process for caregivers, which can include:

  • Processing emotions and coming to terms with the diagnosis
  • Seeking professional support and community
  • Finding new ways to navigate life and the challenges of being a caregiver
  • Exploring short and long-term care plans
  • Ensuring the safety of your loved one through the stages of the disease
  • Planning for legal matters and costs of care

To learn more about these processes and how they may impact you and your family, The Alzheimer’s Association has provided helpful resources for caregivers of patients with neurodegenerative diseases.

The Longest Goodbye: Stages/Transition for Patients

Learning how to navigate the various stages of the disease can be a challenge all of its own. As the disease progresses through these stages, the behaviors of the patient also change.

These behaviors can include:

  • Aggression and anger
  • Anxiety and agitation
  • Depression
  • Hallucinations
  • Memory loss and confusion
  • Repetition
  • Sleep issues and sundowning (deteriorating behavior later in the day)
  • Suspicions and delusions
  • Wandering

As a caregiver, it is crucial to understand and be aware of these behavior changes. Being aware of these stages and knowing how to navigate them can help keep your loved one safe and supported as they move through life.

Good Read

Alzheimer’s is a disease that can take an emotional toll on loved ones. In her book, The Longest Goodbye, Shelly Calcagno reflects on the processes and emotions that come with neurodegenerative disease.

The Longest Goodbye, Shelly Calcagno

“Are we ever ready to say goodbye? I wasn’t prepared for her to go. To have her sit right beside me, yet be so far away. My mother and life-long best friend who doesn’t even remember my name. It’s been the longest goodbye. And I keep asking this question―how do we love through the hardest of days?

The Longest Goodbye is a collection of stories and moments not just about the clinical side of memory loss–but the emotional heart journey. It is a story that shows how joy and grief are often intertwined and wrapped up together in the glorious mess of life.”

Alzheimer’s is a challenging diagnosis that can place an immense burden on family members and caretakers. Seeking professional support can reduce stress, provide clarity, and offer support during times of confusion and distress.

Please reach out with any questions, and as always, stay well!


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