The 36-Hour Day

This family guide by Nancy L. Mace, a retired assistant in psychiatry at the Johns Hopkins University School of Medicine, and Peter V. Rabins, a professor emeritus of psychiatry and medicine at the same institution, addresses the practical, emotional, and medical dimensions of caring for people with Alzheimer disease, other dementias, and memory loss. Its central thesis is that even when the underlying disease cannot be cured, much can be done to improve the quality of life for both the person with dementia and their family.

The book opens with the case of Mrs. Windsor, an elderly woman whose story traces the full trajectory of a progressive dementia: early compensated forgetfulness, acute illness and hospitalization that exposes the severity of her impairment, loss of independent living, a difficult move to her daughter-in-law's home, enrollment in adult day care, and eventual nursing home placement. Through Mrs. Windsor's internal perspective, the authors convey the emotional reality of dementia: nameless fear, panic in unfamiliar settings, the terror of dressing and bathing when the steps no longer make sense, and suspicion that possessions have been stolen. Her story also illustrates that the capacity for enjoyment persists. Music, singing, and physical affection remain sources of comfort long after memory and language have faded.

Mace and Rabins define dementia as an umbrella term for a group of symptoms, including memory loss, impaired reasoning, and disorientation, caused by many different diseases rather than by a single condition. They distinguish dementia from delirium, a separate and often treatable condition involving changes in alertness and concentration. Alzheimer disease is identified as the most frequent cause of irreversible dementia, responsible for roughly 50 to 60 percent of cases, followed by vascular dementia, which results from small strokes in the brain. Lewy body dementia, characterized by abnormal protein clumps that accumulate inside brain cells, and frontotemporal dementias account for smaller but significant percentages. The authors emphasize that severe memory loss is never a normal part of aging: Half of those who live to age 90 never experience significant memory loss.

A thorough medical evaluation is presented as the essential first step. The assessment involves a detailed medical history, physical and neurological examinations, a mental status examination, blood tests, and potentially brain imaging such as CT, MRI, or PET scans. Newer blood tests for amyloid and tau proteins, the abnormal protein deposits that are characteristic markers of Alzheimer disease in the brain, are ordered when mild cognitive impairment (MCI) or early Alzheimer disease is suspected and treatment with recently approved anti-amyloid medications is being considered. The evaluation should also include psychiatric, psychosocial, and occupational therapy assessments to identify remaining abilities and help families plan. The authors argue that every person with thinking and memory problems should be evaluated, because some causes of dementia are treatable or reversible and early detection prevents unnecessary suffering.

A large portion of the book addresses the behavioral symptoms of dementia. The authors explain that these symptoms arise from brain damage and environmental factors, not from deliberate intent. Damaged nerve cells may function intermittently, which is why a person can perform a task one day but not the next. The authors offer a framework called the Six Rs of behavior management: Restrict dangerous behavior, Reassess for physical or environmental triggers, Reconsider the situation from the person's perspective, Rechannel the behavior into a safe outlet, Reassure the person afterward, and Review what happened to prepare for next time.

Specific behavioral symptoms receive detailed treatment. Catastrophic reactions, disproportionate emotional outbursts triggered when the person must process too many things at once, are addressed through simplification and reduced stimulation. Wandering is categorized by cause and managed through ID bracelets, GPS tracking, structured daily activities, and environmental modifications. The authors strongly advise against using antipsychotic medications for wandering, noting these drugs can worsen the behavior and carry a significant risk of death in people with dementia. Sleep disturbances, sundowning (worsening behavior in the afternoon or evening), suspiciousness, hallucinations, and depression are each explained and paired with practical strategies. Depression in a person with dementia should always be treated, the authors stress, as treatment often relieves misery and may reduce other behavioral symptoms. Throughout, the authors recommend responding to the feeling behind the behavior rather than its literal content.

Daily care guidance spans nutrition, bathing, incontinence, exercise, recreation, and home safety. The authors survey hazards room by room and recommend modifications such as removing throw rugs, installing grab bars, and disabling the stove. Bathing is identified as one of the most difficult tasks because it involves multiple steps and loss of privacy. The discussion of tube feeding notes that there is no evidence gastrostomy tubes prolong life or prevent pneumonia in people with dementia.

Medical problems receive a full chapter. People with dementia are especially vulnerable to concurrent illnesses, and even minor health problems can trigger delirium that temporarily worsens confusion. Medications are characterized as a two-edged sword: essential for health but risky because of overmedication, drug interactions, and side effects. End-of-life care is discussed at length, with pneumonia identified as the most common cause of death, occurring in 40 to 60 percent of cases. The authors identify MOLST/POLST forms (portable medical orders specifying a person's wishes for end-of-life care) and durable powers of attorney for health care as essential planning tools, and they urge families to discuss these wishes before an emergency arises.

The book addresses challenging decisions about preserving independence. Losing a job, the ability to manage money, and the ability to drive represent losses that are emotionally significant beyond their practical implications. The authors describe the outside help available to families, including adult day care, home health aides, and respite care, and they directly address caregiver reluctance to use these services. Planning for the caregiver's own illness or death is also presented as essential, since a person with dementia cannot act in their own best interests during an emergency.

The emotional toll on caregivers is explored in depth. Grief in caregiving differs from bereavement because it recurs: Just when the caregiver adjusts, the person changes and the grieving cycle restarts. Guilt can trap caregivers into decisions that serve no one's interest. The authors directly address caregiver mistreatment: Losing one's temper is a warning signal, but hitting, shoving, shaking, or tying down a person represents a more serious threshold requiring immediate help. Support groups, counseling, and regular time away from caregiving are presented as essential rather than optional. The caregiver's mood directly affects the person with dementia, so self-care benefits both.

Family dynamics receive sustained attention. Role changes cause distress beyond their practical inconvenience because new tasks carry symbolic weight as markers of identity and family position. The authors recommend family conferences with ground rules for respectful discussion. Children and teenagers benefit from honest, age-appropriate explanations and active involvement in family decisions.

Financial and legal planning is presented as urgent. Medicare does not cover long-term nursing home care except for short periods following acute illness. In 2024, nursing home care in the United States averaged more than $120,000 per year. Medicaid pays only after the person has exhausted their own resources. The authors stress that a durable power of attorney, which remains in effect after a person becomes mentally incapacitated, must be executed while the person is still legally competent, unlike a general power of attorney, which becomes void upon incapacitation.

The book concludes with chapters on long-term care, prevention, and research. A detailed checklist helps families evaluate nursing homes and assisted living facilities on criteria including staffing, activities, and medication policies. The authors describe modifiable risk factors for dementia, including high blood pressure, physical inactivity, poor diet, hearing loss, and diabetes. The FDA's approval of lecanemab (Leqembi) and donanemab (Kisunla) as treatments for MCI and early Alzheimer disease represents a dramatic change: These drugs remove up to 90 percent of amyloid beta protein from the brain but only modestly improve thinking and carry risks of brain bleeding and swelling. The final chapter frames Alzheimer disease as likely having multiple causes, much like cancer. Genetic research has identified specific genes that directly cause Alzheimer disease in rare cases, while the APOE gene on chromosome 19 modifies risk without guaranteeing the disease. Until prevention and cure are achieved, the authors conclude, the caregiving approaches described throughout the book can improve the well-being of both those who have dementia and those who care for them.