• Anne Huntington

What Do I Tell People

Updated: Mar 13, 2019

This post is dedicated to my Mom, Eleanor Huntington (Dec. 9, 1929 – October 17, 2017).

I have been asked “what do I tell people, when they ask what is wrong?” Or been told “we can’t have people to the house”, out of need to protect their loved one from exposing their changes in behaviors, whether inability to carry a conversation, feed themselves, or behaving in a socially unacceptable manner. And I’ve heard; “I can’t take her out, she will just start yelling for no reason at all”.

Dementia is not like cancer or heart disease, it’s not a disease which can be “fixed” with medicine or surgery. Dementia alters one’s personality, behavior, and functional status. Dementia robs a person their ability to have logical and meaningful conversations, to process and make sense of their environment, and for some, leads to behaviors which are not socially acceptable.

Dementia is not just Alzheimer’s, it’s not just “loss of memory”. Although Alzheimer’s is probably the most common neurodegenerative disorder, it’s only one form of many. According to the National Institute of Health (NIH), Alzheimer’s disease (AD) is age related, it is a progressive deterioration which effects most brain functions. AD starts as short term memory loss, and moves to impaired language, expressive and receptive aphasia, judgement, behavior, and motor skills.

Vascular, Lewy Body, and Frontotemporal dementias are three other very common neurodegenerative disorders. Vascular dementia results from damage to blood vessels and/or reduced oxygen in the brain, whether from strokes, chronic high blood pressure, cholesterol, and/or heart disease and surgery. Vascular dementia manifests as difficulties processing language and information, reasoning, judgement, and planning, according to the

Lewy Body dementia (LBD), another form of progressive neurodegenerative disorder, is caused by a build up of abnormal proteins in nerve cells called Lewy bodies. People with this type of dementia have difficulties with language, motor skills, memory issues, and hallucinations. Frequently, people with LBD also suffer from Parkinson’s disease. (

Frontotemporal dementia (FTD) describes neurodegenerative changes isolated to the frontal and temporal lobes of the brain. This region of the brain is frequently referred to as one’s conscious or ones “brakes”, so damage to this area leads to socially inappropriate behaviors. A once proper woman may suddenly become rude, start swearing or stealing. The person may start to compulsively overeat, become sexually provocative or they may become apathetic. This person is less likely to experience memory impairment. (NIH)

Dementia is a broad, nonspecific term, reflecting changes in the brain. The four dementias mentioned above are not inclusive of all neurodegenerative diseases and definitions have been simplified. Yet, they illustrate the wide range of symptoms and etiology of them.

So, to answer the question; what do I tell people? There are no simply answers, nor simple explanations of this disease process. There are no easy ways to avoid exposing personality or functional changes, while in the presence of others. Life is hard for those suffering from dementia, but it’s also as life changing for the partners, too.

The person who once was an equal, who shared common interests, who could independently tell a joke or story at a social gathering, now must be protected from the harshness of the world. And at the same time, the healthy partner must find new ways to receive and accept care and support, to learn to be alone, and to socialize and have fun in different ways. As much as the person with dementia needs attention, support, and help, so does the spouses, as they frequently are the ones who fall threw the cracks and suffer in silence. Click here for more Helpful Links and Resources.

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