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  • Writer's pictureKimberly Massey

The Important But Unspoken Meaning Behind Labels in Dementia

Updated: Jan 15

Regardless of common children’s rhymes, words are powerful. They can hurt people or heal them. As someone writing about Alzheimer's and dementia, I recognize how difficult it can be to find the right descriptive words for people with dementia and those caring for them.

One challenge is caused by the misleading labels given to caregivers. The common labels for caregivers are usually "volunteer" and "professional". In everyday conversation, those providing care out of love or obligation are volunteer, while those providing care from a work or employment perspective are professional.

Relational caregivers. When someone is providing care out of love or obligation, their participation is motivated by the relationship with the care recipient before their diagnosis. I feel this label is a misnomer – for many, caring for a relative is more of an obligation. Caregiving is extraordinarily difficult, especially for primary caregivers who are ultimately responsible for their loved one. If your spouse or parent has Alzheimer’s, you are their primary caregiver by default. That’s also often the case with siblings and other close relatives if a spouse or adult child are not around. The feeling of duty to one's loved one is often much stronger than the feeling of kindness or charity.

How does compensation play into labels for caregivers? In America, we equate “volunteer” with charitable acts or unpaid work. It is not well known, but family members can be paid for caregiving. Though many aren’t, payment alone does not differentiate between related carers and professional ones.

In fact, someone who is not paid at all may be a professional caregiver. An example of this would be volunteers from a church or charity providing respite care. Their intent may be charitable, but their role is professional.

So, why do the terms we use matter?

There are a wide range of dynamics across families. Some families get along well. Others may be estranged. Family relationships are often strained or broken by the time someone with memory loss begins to need care. Any adult suddenly responsible for another adult may feel conflicted or resentful. But, when the relationship has already broken down, it is especially hard to adjust to the new role. For those who feel they have no choice, being called a “voluntary” caregiver can add insult to injury.

That’s why I prefer the terms relational caregiver or family caregiver. I especially like “relational caregiver” as a descriptive, because the term is flexible and may even be inclusive of friends serving in the role of caregiver.

Professional Caregivers. People who provide care AFTER the diagnosis and BECAUSE of the diagnosis may then reasonably be called professional caregivers. Whether paid or not, these people provide care by choice. They can walk away at any time with no other consequences than financial. Most professional caregivers may care for multiple people at once, or start caring for someone else when one relationship comes to an end.

Care Recipients. What then makes sense when referring to care recipients?

Professionals in the clinical setting often use the term "demented". To be honest, I don’t care for it especially in casual conversation. Demented seems similar to using terms like retard or other slurs. Saying someone "is demented" also confines a person to their illness. It's hard to overlook.

The terms care recipient or care receiver are dispassionate. Even for professional caregivers these terms seem a little cold, and again, put emphasis on a care receiver's helplessness.

Professional caregivers often refer to their charge as "patient." Both patient and client are perfectly fine words for a professional caregiver, but it’s very clinical for a relative, regardless of the relationship status.

Two decent descriptive phrases are "Person with dementia" or "person with Alzheimer’s". both are wordy and a little cumbersome to say. Not to mention, they are a little stiff when considering the intimate nature of caregiving.

Family carers may be comfortable just saying "my relative." This is a good choice in family-based settings, but of course it's not accurate for professional caregivers.

The term I prefer for a care recipient is "loved one." However, I fully understand that there are many reasons why it could be difficult for a relative who has had relationship struggles to use this term. In my discussions with caregivers, I am saddened by the number who share that they raised themselves or had little affection in the family when growing up.

Not only that, but professional caregivers usually won't identify with "loved one" except in a very generic way.

Depending on the audience, "loved one", "relative," and "patient" are likely the most used friendly terms that will also to the largest number of people.

What terms do you use to refer to yourself or your loved one with dementia? What type of caring relationship do you have? Leave your answers in the comments.

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About Me

Caregivers, Dementia, Starfish and the Ocean

Hello! The Tenacious Heart Project is where I share with you my strong belief that we can do better for caregivers and people with dementia.  

It may be overly optimistic thinking that we can improve something as big and important and caregiver support and dementia.  I do understand that.  But in my nearly 30 years in the nonprofit sector, I have seen lives change.  I know it happens on the individual level and I know it can be done on a societal level.

I have my strengths and weaknesses.  One thing I am good at is solving problems.  I like thinking about solutions and how to put those solutions in place.  As noted already, sometimes I never give up.  That stubbornness has benefited my family and I a lot.  When my daughter needed a health advocate, we looked for solutions.  It took five years to find the right specialist, but since we did 18 months ago, her quality of life is exponentially better.   

The more my dad and family are affected by dementia, the more I am compelled to improve options for caregivers and the people they support.  The Tenacious Heart Project is just one small way I hope to help.  I feel like we are all the starfish on the beach.  One day, thousands of starfish washed up on a beach.  Taking a walk, a gentleman saw a young girl carefully picking up a starfish and returning it to the ocean.  He asked her, why are you wasting your time? You'll never help get all the starfish back into the oven.  To which she promptly replied "maybe not, but I helped that one." And she moved on, putting each starfish she encountered back into the ocean. 

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