Do Not Underestimate a Person with Dementia

Knife used for dementia resident escapePeople suffering from dementia are commonly perceived to be incapable of logical thought and written off as cognitively bankrupt, but this is just not the truth of the matter. Dementia takes many years to develop and mental decline progresses ever so slowly over time, leaving cognitive abilities fully functional in many respects and partially impaired in other instances. Mental deficits can’t even be counted on to be consistent as it comes and goes of its own accord, leaving those afflicted with better days of clarity and worse days of utter confusion, hostility and fear. It’s incredibly painful to watch someone you love struggle with these ups and downs and not know just what they can process and what they cannot.

In the early to mid stages of Alzheimer’s disease, my own mother was acutely aware of people treating her differently and talking down to her. I know because she told me point blank one day,

“I don’t like the way people talk to me any more.”

She recognized that people became short with her as she tried to understand something, then lost their patience and spoke to her in a condescending tone that made her feel bad and angry. But at times she employed clever tactics to conceal her cognitive impairments.

I’ve heard a true story recently that illustrates my point. A woman suffering from dementia recently escaped from the Alzheimer’s unit of a nursing home where she was a resident with a premeditated plan. She ordered dinner to be sent to her private room to eat alone one night, then proceeded to fashion the knife delivered with her meal into a screwdriver to unscrew the screen from her window. She then climbed out the window and went off in search of her sister, who had lived in the same area thirty years ago. Soon this dementia patient on the lam was discovered missing, a search was launched, and she was found three blocks away and returned unharmed to her Alzheimer’s unit.

Although this woman’s dementia was advanced enough to warrant nursing home placement, she was mentally astute enough to

  1. want to leave
  2. plan her escape
  3. follow through with the necessary steps to succeed

to the chagrin of the nursing home staff.

People suffering from dementia likely have a much better idea of what is going on around them than what you think, and it is a wise and compassionate caregiving choice not to underestimate their abilities. Please be kind and patient with them to spare their feelings being hurt. They are doing the best they can with limited, constantly changing and diminishing capabilities, and they need our love, understanding and support to ensure their safety and happiness.

What about you? Have you been surprised by the mental abilities of a person with dementia? Let’s hear about it!

2 thoughts on “Do Not Underestimate a Person with Dementia

  1. Charles Macknee, MA

    Greetings Ms. Wheeler:

    I recently stumbled upon your site here after scanning through my Alz Assn e-newsletter, and then found this marvelous little piece of writing. For over 20 years now I have been either directly caregiving for or training caregivers to do the same. I am also midway into writing an extensive autobiographical-style account of my experiences with older folks labeled with everything from ADRDs to fragile-X syndrome, and how using a frame or lens based on the observation of PARADOX in these people’s lives can teach us much about both them and ourselves.

    One of the greatest paradoxes common to, actually, nearly all varieties of brain injury in later life is that during the reformation of one’s new (after being labeled as somehow “mentally defective”) identity, the “afflicted” person must not only deal with/compensate for their disabling condition, but also the reactions of those closest within their family/social circle. The medical term for added side effects or complications to any condition, including cognitive ones, is called “excess disability.”

    This phenomenon can be quite significant for anyone struggling with an incurable CNS disorder, but I believe it is even more of a challenge for elders labeled with dementia because it is further exacerbated by our culture’s ageist attitudes. Social constructionists would argue that it is WE, the support community around the labeled person who really needs to change, and not the elder themselves; and authors from a variety of disciplines, including some (e.g.- see Richard Taylor, PhD) who’ve been living for years with Alzheimer’s have brought this point across very clearly. We around the labeled person, if we are humble enough and have an open mind, can begin to change in the right direction by carefully considering the points you so eloquently make above.

    All I might add is that worn out metaphor of the tightrope that we as caregivers must walk when we allow for the potential and fullest independence of the elder, while simultaneously ensuring that they and ourselves stay safe. Doing this 24/7 is of course an extremely daunting challenge, especially if it is Any activity, social or otherwise, needs to be broken down to the smallest steps that guarantee success while building toward the completion of the activity.

    Thanks so much for your work, and I look forward to reading your book!

    Best wishes,

    Charlie Macknee

    1. Kathleen H. Wheeler Post author

      Thanks so much for visiting and for your insight into this matter. You’ve definitely added some food for thought regarding dementia caregiving and I appreciate it.


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