Getting inside the brain of a dementia patient may be a somewhat hazardous journey. Because dementia is caused by deterioration of the brain and its functions, the landscape of a dementia sufferer’s brain may be bleak. However, this is the very reason why caregivers may empathize with dementia patients.
The person suffering from dementia has a chemically and structurally damaged brain. This is a biological reality beyond the person’s control and should evoke sympathy. The person simply cannot deal with it.
Dementia sufferers are not deliberately obstinate, foolish or unable to comprehend simple directions. He is or she is not just being silly. The impaired person may feel bad about it. Authors Nancy Mace and Peter Rabins remind caregivers that, “The person who has dementia probably feels lost, worried, anxious, vulnerable, and helpless much of the time. He may also be aware that he fails at tasks and feels that he is making a fool of himself . . . .” The person is probably doing his or her best with limited mental resources.
The biological reality of the brain in dementia
More than half of dementia cases are caused by Alzheimer’s disease. Others are caused by factors such as vascular disease, Lewy body dementia, frontotemporal dementia and other medical conditions
With Alzheimer’s, the brain deteriorates to the point where a person cannot remember connections between actions. He or she may forget how to get down a flight of stairs, for example, and wind up injured. It is not carelessness or clumsiness but a misfiring of the brain.
Even simple tasks may seem overwhelming to a dementia sufferer. Getting dressed or taking a shower may seem very complicated. There are simply too many steps involved and the person is simply dumbfounded. Breaking things into simple, manageable, one-at-a-time steps can help.
Sensitive times can bring about catastrophic reactions. These too may be understood by putting oneself in the dementia sufferer’s mental shoes. Being dressed or bathed, or assisted at the toilet would embarrass any adult. Being vulnerable to someone who may be impatient or faintly disgusted makes things harder. A caregiver’s compassion and understanding, as well as allowing plenty of time for such sensitive tasks, can help the dementia sufferer retain dignity.
Sometimes, after a long day with stress on the brain, dementia sufferers exhibit “Sundown Syndrome.” They may have catastrophic reactions in the evenings. Soothing evening rituals, calm adherence to routine and keeping the environment as little stimuli as possible can help.
Dementia behavior often reflects frustration with brain impairment
Dementia sufferers may frustrate their caregivers by pacing, rummaging through drawers and wandering. Some “shadow” their caregivers, sticking closely to them. Empathy is often the answer. Perhaps the person is distraught over his or her life situation and trying to pace off tension. Perhaps when he or she rummages through the house, the person is trying to find familiar objects to cling to in a world that is veering.
It’s important to try to perceive things the way the dementia sufferer sees them. Dementia sufferers react as they do for touchingly human reasons. They may feel threatened or trapped or as if dignity and decision-making power have been reduced or removed. Dementia sufferers live in a world they cannot comprehend, an alien world. They are old, vulnerable and may not feel well.
When people living with dementia get unreasonably upset, caregivers can get inside their heads by asking such questions as What emotional, psychological, or physical needs are being ignored? Does the person need validation or to be given minor decision-making power or reassured and comforted? Is he or she hungry, too hot, too cold or in pain?
The brain of a dementia sufferer is unknown territory- terra incognita. With empathy, though, the caregiver can approach him or her through the heart.
Cramer, Luciana. Taking a Fresher Look at Sundowning. Caregiver Tips & Tools. Number 36. California Central Chapter. Alzheimer’s Association. Available at http://www.alz.org/cacentral/documents/Dementia_Care_36_Sundowners.pdf. Retrieved November 14, 2016.
Feil, Naomi. What Is Validation. Available online at https://vfvalidation.org/web.php?request=what_is_validation.
Macaulay, Susan. Teepa Snow Demonstrates 10 Ways to Calm a Crisis with a Person living with Alzheimer’s/Dementia. “My Alzheimer’s Story,” August 28, 2015. Available online at http://myalzheimersstory.com/2015/08/28/teepa-snow-demos-10-ways-to-calm-a-crisis-with-a-person-living-with-alzheimers-dementia/.
Mace, Nancy L., and Rabins, Peter. V. (September 2012). The 36-Hour Day. A Family Guide to Caring for People Who Have Alzheimer’s Disease, Related Dementias, and Memory Loss. New York: Grand Central Life & Style. Originally published by the Johns Hopkins University Press, 1981. Direct quotes: Pps. 18, 11-12, 39, 41, 53, 142.