No Longer Invisible

Family caregivers of people living with dementia have been called "the invisible second patients" of the condition. We know so little about caregivers' daily experiences that it becomes impossible to meaningfully support them.

This website is designed to illuminate the impacts of Alzheimer's disease and other dementias on family caregivers. It explores the financial, social, emotional and physical challenges associated with caregiving.

It takes the invisible and makes it visible.

We hope our stories on this site spark important conversations about the social justice implications of dementia caregiving.

2021-2022 Communication Capstone Students
Cabrini University

In his book, The Dementia Caregiver, Marc E. Agronin shares these 10 truths about caring for a person with Alzheimer's disease or other neurocognitive disorders. 

#1

Know What You Are Dealing With

Caregivers can help their person living with dementia (PLWD) create a plan for the future by becoming educated on the diagnosis and its likely progress.

#2

Train Yourself

There is no definitive guide to dementia caregiving. You must educate yourself. Become knowledgeable about the caregiving process, as well as the expected social, emotional, physical and financial impacts that lie ahead for you and the care recipient.

#3

Be Prepared

You'll be keeping track of a lot of information for your care recipient. This information includes their list of medications, notes from each doctor visits, contact information for care professionals and more. Consider how you will organize and carry this information, along with personal care items like a change of clothes, medications, medical equipment, etc.

#4

Adjust Your Expectations

There is currently no cure for Alzheimer's disease and related dementias. That does not mean that you need to take a hands-off, deficient approach to caregiving. Rather, a hands-on, holistic approach that seeks to preserve the dignity of the care recipient is recommended.

#5

Be Proactive

Caregiving cannot happen in a vacuum. It can become too overwhelming. Seek out the support of family, friends and members of the community to assist you in your caregiving responsibilities. In addition, review financial and medical plans early and often to make necessary changes and mitigate having to make decisions in a crisis state.

#6

Be Persistent

Not every caregiving approach will work for the care recipient. Not every medical treatment will as well. The key is remain committed to trying new approaches when existing ones don't appear to be working. 

#7

Find Your Dream Team

Caregiving can be a very isolating process. It takes a team of people to support you and the care recipient in this journey. These individuals include licensed therapists and social workers, doctors, nurses, trained at-home aides, and many more. Find individuals you can trust and rely upon.

#8

Know Your Limits

It can be difficult to give over the care for your care recipient to someone other than yourself. Doing so can often elicit feelings of guilt, shame and anxiety. Yet, caregiving is a full-time responsibility and knowing when to enlist the help and support of others is an important element to your own care and well-being. 

#9

Keep Living

As difficult as it may be to take a moment's break from caregiving, the reality is that it is essential to care and nourish yourself as well during this process - socially, emotionally, spiritually, and physically. Seek respite care for your care recipient to give yourself time to do what you enjoy or try a new activity. 

#10

Everything Comes to an End

People with Alzheimer's disease and other dementias will eventually enter into the terminal phase of their condition. When they do, the caregiving becomes more difficult, and in some respects, more deeply meaningful and purpose-driven. Your one final role is to guide your care recipient through their final transition while also being kind and gentle to yourself. 

Cabrini | Communication

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