Treatment and Care for Patients with Moderate to Severe Alzheimer's Disease

Alzheimer's disease is a progressive neurodegenerative disorder. It involves far more than memory loss — it gradually affects a patient's emotions, personality, and behavior. If mild cognitive impairment tests a person's memory, moderate to severe Alzheimer's disease tests an entire family's endurance, physical strength, and psychological limits.

By the moderate to severe stage (corresponding to a Clinical Dementia Rating, or CDR, of 2 to 3), a patient's ability to perform activities of daily living (ADLs) has already collapsed[1]. Here is a comparison between mild cognitive impairment and moderate to severe dementia:

Mild cognitive impairment (MCI): The patient is forgetful and misplaces things, but can still go grocery shopping, cook, and pay utility bills without any problem.

Moderate to severe dementia: The patient cannot independently perform even the most basic tasks — dressing, eating, or using the toilet — and may lose the ability to communicate through language entirely, becoming completely dependent on family members.

In the brains of patients with moderate to severe disease, neurons undergo widespread degeneration, death, and severe atrophy. In particular, the hippocampus, which governs memory, and the neural networks of the cerebral cortex, which govern thinking, collapse. This robs patients not only of their memories but also of their ability to regulate emotions, recognize loved ones, and understand spatial relationships.

Below are some situations that may arise and the measures family members can take to respond:

1. The patient frequently experiences hallucinations and other symptoms. What should we do?

When a patient frequently experiences hallucinations, delusions, or a reversed day-night cycle (sundown syndrome), this is indeed a sign of disease progression and often indicates further damage to the frontal and temporal lobes. As the sun sets and the light in the house dims, the patient's brain misreads the environment more easily, perceiving shadows as ghosts — this is sundown syndrome. Non-drug interventions are the first choice (for example, closing the curtains early in the evening and turning on bright, warm lights)[2]. If the symptoms seriously threaten safety, medication must be precisely adjusted under a doctor's guidance.

2. Why does the patient fail to recognize loved ones? How should family members respond?

Many patients with moderate to severe disease will fail to recognize family members or become stubborn and even aggressive. This is because the brain's face-recognition center has become "disconnected." Your face may look familiar to them, but their brain can no longer connect that face with "my spouse" or "my daughter." When faced with their stubbornness or even hitting and cursing, family members must never confront them head-on with reasoning. The more you argue, "I'm your son — how can you not recognize me?" the more they feel you are trying to harm them. At times like this, learn to go along with them and redirect their attention, following their train of thought and steering the conversation elsewhere.

3. The patient is bedridden long-term or has limited mobility. How do we prevent bedsores and blood clots?

(1)The core of pressure ulcer prevention is "turning at regular intervals and relieving pressure on specific areas."Strictly turn the patient every two hours[3], use an air mattress, and keep the skin clean and dry.

(2)Never raise the head of the bed more than 30 degrees, to prevent the body from sliding down and creating shear force that tears the skin.

(3)As for blood clots, encourage active or passive joint flexion and extension in bed.

(4)If one lower leg suddenly becomes swollen, red, and warm, never massage it blindly — seek medical attention immediately to rule out deep vein thrombosis.

4. How do we assess the safety risks in the patient's home?

The home must immediately undergo "age-friendly and dementia-friendly modifications": install double locks or an alarm on the front door to prevent wandering; place non-slip mats and grab bars in the bathroom to prevent falls; and lock all sharp objects, cleaning supplies, and medications in cabinets with locks to prevent accidental ingestion.

5. Under long-term, high-intensity caregiving, how can family members take care of themselves?

If a long-term caregiver experiences persistent insomnia, constant irritability, or resentment and even guilt toward the patient, this is what medicine calls "caregiver burnout syndrome." Remember: taking care of yourself is the greatest responsibility you have to the patient. The family must establish a rotating duty system — never let one person bear the burden alone[4]. At the same time, make good use of community respite services: arrange short-term care for the patient for a few days and give yourself a break.

As the journey progresses, families do not have to walk it alone — doctors, nurses, social workers, and community support systems are all part of the care team. Seeking help is not a sign of weakness; it is a sign of wisdom and strength. With the right combination of medical treatment, thoughtful caregiving, and self-compassion, families can continue to provide comfort and dignity to their loved ones — one day at a time.

[1] McDougall GJ. A review of screening instruments for assessing cognition and mental status in older adults. Nurse Pract. 1990 Nov;15(11):18-28. PMID: 2255423; PMCID: PMC6751405.

https://pmc.ncbi.nlm.nih.gov/articles/PMC6751405/

[2]Bessey LJ, Walaszek A. Management of Behavioral and Psychological Symptoms of Dementia. Curr Psychiatry Rep. 2019 Jul 1;21(8):66. doi: 10.1007/s11920-019-1049-5. PMID: 31264056.

https://pubmed.ncbi.nlm.nih.gov/31264056/

[3]Seiler WO, Stähelin HB. Decubitus ulcers: preventive techniques for the elderly patient. Geriatrics. 1985 Jul;40(7):53-60. PMID: 4007498.

https://pubmed.ncbi.nlm.nih.gov/4007498/#1

[4]Bouati N, Sagne A, et al. Exhaustion of family caregivers: a masked domestic crisis? A psychodynamic and systemic approach. Geriatr Psychol Neuropsychiatr Vieil. 2016 Mar;14(1):67-76. French. doi: 10.1684/pnv.2016.0585. PMID: 27005338.

https://pubmed.ncbi.nlm.nih.gov/27005338/