Alzheimer’s Disease Stages

Do not leave your loved one in a nursing home:

At the nursing home where I worked, many Alzheimer’s and dementia patients spent their days in wheelchairs, often staring blankly at the ceiling near the nurses’ station or dozing off in their chairs. This behavior may be a result of the medications they were taking. In contrast, patients receiving home care typically get enough sleep at night and remain alert during the day. I believe this is largely due to regular exercise and a balanced, healthy diet.

Alzheimer’s Disease Stages

Stage 1

Normal (No Cognitive Impairment)

•  No issues with memory or daily activities.

•  Example: Occasional age-related forgetfulness, like briefly forgetting a name but recalling it soon after.

Stage 2:

Very Mild Cognitive Decline

•  Slight forgetfulness that doesn’t significantly affect daily life. Not yet diagnosed.

•  Example: Misplacing keys or taking a moment to recall someone’s name.

Stage 3:

Mild Cognitive Impairment (MCI)

•  Noticeable decline in memory or focus, often observed by family or friends. May be diagnosed as Mild Cognitive Impairment (MCI).

•  Example: Forgetting appointments or repeating questions in conversation.

Stage 4:

Mild Alzheimer’s Disease

•  Daily life begins to be affected. Short-term memory weakens, and tasks like planning or managing money become challenging.

•  Example: Making errors in shopping calculations or forgetting recent events.

Stage 5:

Moderate Alzheimer’s Disease

•  Requires help with daily activities. Memory gaps are noticeable, and choosing appropriate clothing or keeping track of the day becomes difficult.

•  Example: Not knowing what day it is or struggling to pick weather-appropriate clothes.

Stage 6:

Severe Alzheimer’s Disease

•  Significant decline in memory and cognitive abilities. Personality changes or wandering may occur. Full assistance is needed for eating and dressing.

•  Example: Unable to recognize family members or needing help with toileting.

Stage 7:

Very Severe Alzheimer’s Disease (End Stage)

•  Nearly complete loss of speech and mobility. Requires full assistance with eating and movement, often becoming bedridden.

•  Example: Barely able to speak, needing total support for swallowing meals or walking.

End of Life

As the end of life approaches, Alzheimer’s and dementia patients often experience difficulty swallowing, leading to a transition from solid to soft foods. Liquids like water or tea are thickened with agents like potato starch to ensure safe hydration. Gradually, patients may stop eating altogether, which is considered a natural part of preparing for death.

At this stage, some families opt for a gastrostomy, a life-prolonging treatment, but I believe this is often not the best choice. The formula used in gastrostomy feeding is high in sugar, which can rapidly elevate blood sugar levels and increase the risk of diabetes. Additionally, as the body weakens, severe bedsores may develop, and in many nursing homes, adequate care may not be provided to address these issues.

This is one of the key reasons I advise against placing loved ones in nursing homes. Whenever possible, providing care in a loving, familiar environment can offer patients greater comfort and dignity in their final days.

What to do if you suspect nursing home neglect

•  Alzheimer’s Association (alz.org): Offers a 24/7 helpline (1-800-272-3900) and resources for caregivers.

•  National Center on Elder Abuse (ncea.acl.gov): Provides state-specific reporting contacts.

•  Adult Protective Services: Call 1-800-677-1116 to locate your local office.

Alzheimer’s-Specific Considerations

•  Cognitive Challenges: Alzheimer’s patients may not report neglect due to memory or communication issues. Rely on physical signs (e.g., bedsores, weight loss) and behavioral changes (e.g., increased agitation).

•  Medication Risks: You mentioned overmedication in nursing homes. Check medication logs to ensure proper dosing, as overmedication can cause disorientation or sleepiness.

•  End-Stage Care: For stage 7 Alzheimer’s patients (as you discussed with gastrostomy and bedsores), neglect like untreated bedsores or improper feeding can be life-threatening. Advocate for palliative care or hospice to prioritize comfort.

Steps to Take if You Suspect Nursing Home Neglect

1.  Recognize the Signs of NeglectNeglect in nursing homes can manifest in various ways, particularly for Alzheimer’s patients who may not be able to communicate their needs. Based on your observations (e.g., patients appearing disoriented, malnourished, or with bedsores), watch for these warning signs:

•  Physical Signs: Unexplained weight loss, dehydration, bedsores (pressure ulcers), poor hygiene (e.g., unwashed hair, soiled clothing), or untreated infections.

•  Emotional/Behavioral Signs: Withdrawal, depression, anxiety, or fear around staff, which may mimic Alzheimer’s symptoms but could indicate neglect.

•  Environmental Signs: Unsanitary living conditions, ignored call buttons, or untouched food trays.

•  Medical Neglect: Failure to administer medications properly, missed medical appointments, or untreated health issues (e.g., infections or diabetes complications, as you mentioned with gastrostomy formulas).

•  Example from Your Experience: You noted Alzheimer’s patients in wheelchairs, appearing disoriented or overly medicated, and suffering from malnutrition. These are red flags of neglect, such as inadequate supervision, poor nutrition, or overmedication.

2.  Document Your Observations

•  Record specific details, including dates, times, and descriptions of incidents (e.g., bedsores, weight loss, or unchanged bedding). Take photos if safe and appropriate (e.g., of injuries or unsanitary conditions).

•  Note conversations with staff and their responses. For Alzheimer’s patients, document behavioral changes (e.g., increased agitation or withdrawal) that may not be solely due to disease progression.

•  Example: If you notice a loved one’s bedsores worsening (as you mentioned with gastrostomy complications), document their size, location, and any staff explanations. This evidence is critical for investigations.

3.  Talk to Your Loved One (If Possible)

•  For Alzheimer’s patients, communication may be challenging due to cognitive decline. Use simple, calm questions to gauge their feelings (e.g., “Do you feel safe?” or “Are you getting enough food?”).

•  Look for non-verbal cues like fear, discomfort, or reluctance around certain staff members. If they can’t communicate, rely on physical and behavioral signs.

•  Example: You mentioned patients sharing family stories because they felt unheard. This could indicate emotional neglect, so observe if your loved one seems isolated or ignored.

4.  Address Concerns with the Nursing Home

•  Request a meeting with the nursing home’s administration or director to discuss your concerns. Be specific about observed issues (e.g., “I noticed my loved one’s meals are often untouched, and they’ve lost weight”).

•  Ask for explanations about care plans, staffing levels, and medical oversight. For Alzheimer’s patients, inquire about specialized care (e.g., dementia-trained staff or nutrition plans).

•  If responses are unsatisfactory, escalate to the facility’s ombudsman or file a formal complaint with the nursing home.

5.  Report Suspected Neglect to Authorities

•  Immediate Danger: If your loved one is in immediate danger (e.g., severe bedsores, untreated infections, or dehydration), call 911 or local law enforcement right away.

•  Adult Protective Services (APS): Contact your state’s APS to report neglect. In the U.S., call 1-800-677-1116 to find your local APS office, or in Michigan (as an example), call 855-444-3911. APS investigates neglect and can coordinate with social workers to address health and safety.

•  Long-Term Care Ombudsman: Every state has an ombudsman program to investigate nursing home complaints. They advocate for residents and can mediate issues. Find your state’s ombudsman via the National Long-Term Care Ombudsman Resource Center (theconsumervoice.org).

•  State Health Department: File a complaint with your state’s health department, which oversees nursing home regulations. For example, in New York, call 1-866-893-6772 to report issues.

•  Example Action: If you suspect neglect like untreated bedsores (as you noted), report to APS and the ombudsman, citing specific observations (e.g., “My loved one has a stage 3 bedsore that hasn’t been treated for weeks”).

6.  Consult a Nursing Home Abuse Attorney

•  If neglect has caused harm (e.g., infections, worsening health, or emotional distress), contact an experienced nursing home abuse lawyer. They can evaluate your case, gather evidence (e.g., medical records), and pursue compensation for medical costs, pain, or relocation to a better facility.

•  Act quickly, as states have statutes of limitations (typically 1–3 years) for filing claims. For a free consultation, contact firms like the Nursing Home Abuse Center (1-855-264-6310) or local attorneys specializing in elder law.

•  Example: You expressed concerns about gastrostomy formulas causing diabetes or bedsores. An attorney can investigate whether improper medical care contributed and hold the facility accountable.

7.  Visit Frequently and Vary Your Schedule

•  Make unannounced visits at different times (e.g., evenings or weekends) to observe care quality. Check your loved one’s hygiene, room cleanliness, and interactions with staff.

•  For Alzheimer’s patients, frequent visits help you monitor subtle changes (e.g., weight loss or disorientation) that may not be solely disease-related. Your presence also signals to staff that you’re vigilant.

•  Example: You noted patients circling the nurses’ station or sleeping in chairs. During visits, check if staff are neglecting mobility assistance or overmedicating residents.

8.  Consider Alternative Care Options

•  Based on your strong preference for in-home care (mentioned on July 15, 2025), explore moving your loved one to a home setting with professional caregivers or family support. In-home care can provide personalized attention, especially for Alzheimer’s patients needing tailored nutrition and mobility help.

•  Contact local agencies (e.g., Japan’s Long-Term Care Insurance Program or U.S. home health agencies) for support. In the U.S., Medicare or Medicaid may cover some in-home care costs.

•  Example: You highlighted the benefits of in-home care (e.g., better sleep, exercise, and diet). Work with a social worker or case manager to transition your loved one if neglect persists.

9.  Build a Support Network

•  Engage family, friends, or other residents’ families to monitor care and share observations. Join support groups for Alzheimer’s caregivers (e.g., Alzheimer’s Association or Japan’s Dementia Family Support Groups) to share strategies and resources.

Legal and Ethical Considerations for Cameras

U.S. Laws:

Some states (e.g., Texas, New Mexico) allow cameras in nursing home residents’ rooms with consent, but restroom areas are highly restricted due to privacy laws (HIPAA). Cameras outside restrooms may be permissible if focused on public areas, but policies vary by state. Check with your state’s health department (e.g., Michigan: 517-241-3740).