For more than three decades The 36-Hour Day has been a definitive guide for caregivers of people with dementia. In the guide, authors Nancy L. Mace and Peter V. Rabins cover every aspect of caring for persons with cognitive impairment. They also have wise words about caregiver self-care, and their style is medically accurate and easily accessible. Thus, it is a book a caregiver may wish to keep close by for handy reference.
The authors acknowledge that dementia remains unpreventable and incurable, as it was in 1981, when the book was first published. Yet, they say, much has been learned about helping people care for dementia sufferers. The authors remind readers that “confused people and their families do still experience joy and happiness.” They note that keeping a sense of perspective and humor helps all around.
The authors say the word “dementia” describes a group of symptoms characterized by three things. These are: 1.) impaired daily functioning due to damaged intellectual abilities, 2.) adult onset, 3.) awake and alert patients.
They say half or more of dementia cases stem from Alzheimer’s disease. Much smaller percentages are caused by vascular disease, a combination of Alzheimer’s and vascular disease, Lewy body dementia, frontotemporal dementia, or other medical conditions.
First Things First: a Diagnosis of Dementia
Diagnosis is important, because depression, which is fairly common in older people, can mimic dementia. It is important, the authors assert, not to ascribe memory loss and loss of function or confusion to “old age.” The authors emphasize that “severe memory loss is never a normal part of growing older.” In fact, very small percentages of older people have dementia. Diseases giving rise to dementia do become more prevalent in people who survive into their 80s and 90s. Yet even then, only 50% to 70% of those who live into very old age suffer significant memory loss or other symptoms of dementia. Dementia is not the norm for growing older.
“Severe memory loss is never a normal part of growing older.”
50 to 70% of those who live into very old age never experience
significant memory loss or other symptoms of dementia.
The Person with Dementia
Mace and Rabins evoke much empathy for dementia sufferers. They remind readers that dementia is caused by biological factors—chemical and structural deterioration in the afflicted person’s brain. There is nothing deliberate or willful about the person’s behavior or lapses.
The authors 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 authors remind readers: “The person you are caring for is also often miserable and is doing the best he can.”
Such perspectives can help caregivers take difficult times less personally. It is important to know that it is the disease talking and acting—not the person with dementia and not because of any shortcomings of the caregiver.
Catastrophic Reactions—the Dementia Caregiver’s Dread
For a person with this disease, even simple tasks may seem overwhelming. Thus, the person’s stress levels may escalate into a “catastrophic reaction.” These reactions can get physical and it is best to prevent them, if possible. Knowing common causes of catastrophic reactions can help.
For example, telling the person to do something that involves many steps may overwhelm him or her. A suggestion such as “Dress yourself” or “Take a bath” may result in overload. The authors say, “The key is to simplify, to reduce the number of signals the impaired, disoriented brain must sort out.”
Other factors also may make dressing and bathing bases for catastrophic reactions. Bathing and dressing can be sensitive. As the authors say, “Having other people’s hands and eyes on one’s naked, aging, not-so-beautiful body is an acutely uncomfortable experience.”
The authors suggest that keeping a log of catastrophic reactions and looking for triggers to avoid may help reduce such incidents.
Other Maddening Behaviors—Wandering and Shadowing
Dementia sufferers engage in some unsettling behaviors. Some may pace, rummage through drawers, wander off, or shadow a caregiver. The authors counsel the caregiver to look for the reasons underneath such disturbing behavior. The wanderer probably feels lost and may be searching for who he or she used to be, or for familiarity. The person who shadows a caregiver constantly may be clinging to someone trustworthy in a seemingly confused and unreliable world. Calm equanimity is the best response on the caregiver’s part. It helps to understand that the behaviors are because the person is in the grip of a disease he or she can neither fight nor control.
Empathy for the Dementia Caregiver
The authors note that caregivers may be impacted in their marriages and their relationships with their young, teenage, or adult children. Their work lives may suffer. Their relationships with parents, siblings, and other family members will be altered. Dementia has family-wide impact.
What is more, caregivers sometimes need care themselves. Whether physically sick or not, they need periodic respite.
Caregivers may suffer from an array of uncomfortable emotions, including anger, powerlessness, resentment, shame, guilt, sorrow or anxiety. Yet there may also be moments of joy, fulfillment, and emotional reward. Navigating the emotional roller coaster can be difficult for the caregiver.
The authors advise caregivers to get out and about. It is important to have friends, avoid isolation, and get help. They can also join support groups to bond with others in similar situations. Also, it is vital for caregivers to pursue individual interests so that caregiving does not become all-consuming.
The 36-Hour Day is full of wisdom and useful information. The book is a readily understandable, accessible, and helpful guide for caregivers of dementia patients. It is no wonder it has been called the “Bible” of dementia caregiving for decades.
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.