The terms and words people use matter.  Words currently used to describe people who are living with dementia, including Alzheimer’s are frequently derogatory and discriminatory.   They may be called “demented”, “victim”, and “sufferer,” and the condition described as a “dementing illness” or an “affliction”.  Individuals often face social isolation because negative perceptions can fuel misunderstanding, distrust, and add to the challenge of living with the condition. This presents significant barriers to being able to live life fully with dementia and perpetuates the stigmas and misperceptions about the condition.

Language can have tremendous impact on how people living with dementia feel about themselves and how they are treated and considered by others. Using appropriate language is respectful, supportive, and non-discriminatory. The term “person living with dementia” acknowledges that dementia is not the defining aspect in the person’s life, but rather is just one facet of his/her life.

 

The Power of Words” is a wonderful example of the significance words have.

https://vimeo.com/122528299

Borrowing from the excellent work developed by Alzheimer’s Australia titled “Dementia Language Guidelines,” as well as interviews and discussions with people living with dementia, the following are some of the Dementia Action Alliance’s recommended words and the rationale for using them found in the white paper.

RECOMMENDED WORDS WORDS TO AVOID RATIONALE
•  Person living with dementia; or a specific condition (ex: person living with Lewy Body dementia)

•  Patient (only appropriate when used in the context of a medical event)

•  Patient (inappropriate when used outside of a medical event)

•  Sufferer

•  Victim

•  Demented

•  Demented person

•  Dementing illness

•  Senile

•  Afflicted

•  Wanderer

•  Sundowner

•  Feeder

•  Empty shell

•  Losing his/her mind

•  Loss of self

•  Not all there

•  Behavior problem

•  PWD (researchers)

•  PLWD (researchers)

Webster’s dictionary defines “patient” as – a person receiving medical treatment. When the word “patient” is used in circumstances that are non-medical it infers the person’s life is an on-going medical treatment which is stigmatizing.The words listed under those to avoid are considered derogatory and offensive and should never be used.

NOTE

The use of acronyms in research work infers a lack of sensitivity and respect for the personhood of an individual or group of people. Spelling out the words is a sign of respect.

•  Person living with dementia; or a specific condition (ex: person living with Lewy Body dementia)

•  Patient (only appropriate when used in the context of a medical event)

•  Patient (inappropriate when used outside of a medical event)

•  Sufferer

•  Victim

•  Demented

•  Demented person

•  Dementing illness

•  Senile

•  Afflicted

•  Wanderer

•  Sundowner

•  Feeder

•  Empty shell

•  Losing his/her mind

•  Loss of self

•  Not all there

•  Behavior problem

•  PWD (researchers)

•  PLWD (researchers)

Webster’s dictionary defines “patient” as – a person receiving medical treatment. When the word “patient” is used in circumstances that are non-medical it infers the person’s life is an on-going medical treatment which is stigmatizing.The words listed under those to avoid are considered derogatory and offensive and should never be used.

NOTE

The use of acronyms in research work infers a lack of sensitivity and respect for the personhood of an individual or group of people. Spelling out the words is a sign of respect.

 

•  Dementia, including Alzheimer’s; or

•  Dementia as the umbrella term for the many different forms of memory loss and other cognitive impairments

•  Alzheimer’s unless used to refer specifically to that type of dementia Not everyone who has dementia has Alzheimer’s disease. It is insensitive when the term is used ubiquitously. The term “dementia,” however, is a general term and can be used inclusively.
•  Care partner

•  Spouse, wife/husband, daughter/son, family member, loved one, or friend

•  Carer

 

*(It is best to ask the individual in the support role how he/she would like to be known as.)

•  Caretaker

•  Caregiver

•  Custodian

•  Dutiful wife/husband, etc.

•  Person burdened with care

It is important to use words that recognize the reciprocity and caring relationship between the person living with dementia and their care partner.   While the level of support varies based on the stage of the condition, words that support a positive relationship-based connection are preferred.
Providing -•  Support

•  Assistance

•  Care and support

Providing -•  Caregiving

•  Care

Words such as “caregiving” and “care” infer a one-way relationship.