Chapter 19
Providing Care for People Who Have Alzheimer’s Disease and Related Dementias

Key Terms

Why Do People Become Confused?

Confusion is a symptom of memory loss—cognitive impairment affecting thinking, understanding, remembering, problem‑solving and learning. It is not a normal part of aging. Many older adults retain normal cognition. Reversible causes include medication effects, poor nutrition/fasting, vitamin deficiency and illnesses (e.g., lung infection, stroke, heart attack, depression, hypothermia, hypoglycemia, brain tumors, alcoholism). Treating these can reduce memory loss symptoms.

Chronic, non‑reversible causes are commonly called dementias. Dementia is characterized by progressive loss of mental powers and personality changes; the person becomes confused, has difficulty conversing, may become anxious or aggressive, and gradually loses independence. Roughly half of nursing‑home residents have some type of dementia.

Facts About Dementia

• Chronic, progressive brain disorders with memory loss, personality change, problems with reasoning/orientation/personal care.
• Not caused by stress or too much/too little mental activity; not a normal part of aging, though risk increases with age.
• Estimated 6–10% of people ≥65 have dementia; about 30% of those ≥85.
• Treatment may relieve some symptoms; earlier recognition of Alzheimer’s can extend survival up to 10+ years post‑diagnosis.
• Main types: vascular dementia, Lewy body dementia, frontotemporal lobe dementia; Alzheimer’s is the most common.

Alzheimer’s Disease

Characterized by the death of nerve cells, causing memory loss (mild→severe), depression, confusion and difficulty thinking.

Responding to People Who Have Alzheimer’s Disease or Other Dementias

People with dementia have the same basic needs as others, but their condition limits capacity to meet those needs and behavior may become dysfunctional. View behavior as communication—your task is to interpret and respond appropriately while preserving dignity and respect.

Common Patterns & Responses

Social Facade

Early in the illness, individuals may pretend to recognize others to preserve dignity. Help by making eye contact, speaking slowly with simple sentences, asking general questions and giving context (“Mrs. McDay, your husband is coming down the hall.”). Keep interactions brief.

Pacing and Wandering

May result from overstimulation, discomfort, anxiety, disorientation, searching for someone/something or dislike of current situation. Safety is a concern.

• Reassure; listen for clues; offer “May I walk with you?” and gently guide back.
• Redirect to safe activities (snack, walk, preferred task); escort to bathroom; consider removing shoes temporarily to cue sitting/lying (replace if not effective).
• Offer tactile item to handle; talk and listen; place familiar object at room entrance.
• Use safety systems (secured doors, alarms, bracelets) and ID jewelry/cards for home care.

Rummaging & Hoarding

• Don’t scold; use distraction, snacks or reorientation to personal belongings; escort to bathroom.
• Learn common hiding places; label items; keep valuables secured; maintain spare keys; create a “rummaging drawer.”

Catastrophic Reactions

Overwhelming situations can trigger yelling/striking due to lost impulse control.

• Identify yourself; watch nonverbal cues; don’t take it personally; avoid arguments; keep routines structured.
• Keep everyone safe without restraints; acknowledge feelings (“You seem upset…”); explore fear/pain; use favored activities to distract; retry care later if needed.

Sundowning

Increasing restlessness/confusion in late afternoon/evening: anxiety, suspiciousness, disorientation.

• Rule out physical needs (toilet, hunger, discomfort, pain); accept feelings; provide night light and soothing environment; stay and talk softly; gentle touch; comforting object; calming music; consistent bedtime routine.
• Keep mornings active; rest after lunch if that fits prior routine; fewer evening activities; avoid arguments/choices during anxious periods.

Making a Difference in Care

Dementias progress in stages; caregiver demands increase over time. Understanding disease and behaviors enables safe, compassionate care. Joy and comfort still matter—warm bed, gentle massage, soft music, pleasant aromas, bright colors. See the person beyond the disease.

• Behaviors are condition‑driven, not deliberate; treat adults with dignity—never ridicule or ignore presence.
• Be creative/flexible; avoid difficult choices and “why” questions; maintain calm, organized environment; discuss pleasant past events; be patient.

Caregiving Tips

Communicating

• Stand in front; eye contact; gentle touch to focus attention; speak softly/slowly/clearly with simple words; repeat exactly if needed; minimize noise/distractions.
• Use direct statements; call by name; allow extra time to answer; use positive framing.
• Don’t argue with the person’s reality; respond to emotions; provide orientation cues kindly.

Responding to Behavior

• Avoid accusations; use distraction/change of scene; many problems resolve with simple redirection.

Orderly & Safe Environment

• Simple routines; avoid triggers; demonstrate tasks; break activities into small steps; remove hazards (see Box 19‑1).

Caregiving Techniques for Daily Activities

Bathing

• Respect privacy/dignity; follow preferred schedule; prepare supplies; use positive language.
• If resisting, distract or try later; avoid showers if frightening; adjust tub water to comfort; keep room warm; ensure mats/rails/bars; remove bathroom locks; remove electric appliances; never leave alone.

Oral Hygiene

• If resisting, pause and retry later; use gestures/mirroring; consider recliner positioning to feel less threatened.

Dressing & Grooming

• Same time daily; allow maximum independence; allow extra time; limit choices (duplicate favorite outfits); lay clothes in order; give stepwise prompts; pick easy‑on/off garments (elastic/Velcro); nonskid shoes (not backless); slow pace and return later if frustrated.

Mealtime

• Use finger foods if helpful; modify texture if choking risk; serve favorites; visible healthy snacks; cups with lids/straws; self‑help devices; serve warm (not too hot/cold); few choices and small portions; one food at a time; simple cues (“Pick up your fork...”); reminders to chew/swallow; keep condiments off table unless requested; keep non‑food look‑alikes out of sight.

Elimination

• Picture of a toilet on bathroom door; reflective tape for night; regular schedule (post‑meal toileting); watch for restlessness cues; turn on light first; cover/remove mirrors if reflections cause fear; assist with clothing; respect privacy; encourage high‑fiber diet; limit evening caffeine to reduce nighttime accidents.

Helping People Who are Agitated, Confused or Wandering

Gather reliable information from the person, family/friends and your observations—watch behavior and facial expression. Use clues and targeted questions.

Focus Areas

• Environment: Restful, low‑stress setting reduces restraint need.
• Kindness: Gentle, respectful approach works best.
• Quiet: Speak softly; reduce noise; play favorite music quietly.
• Calmness: Rocking chairs, soft items to hold can calm.
• Familiarity: Encourage personal items from home; homelike rooms reduce wandering urge.

Understanding the Needs of Family Caregivers

Dementia is lifelong and overwhelming for the person and family. Dysfunctional behaviors are hard to understand; families must care for their own needs to cope and still celebrate the person’s life. Involve family in care planning when possible—the family is an essential part of care.