Navigating the Final Stage of Alzheimer’s: Tips for Family Caregivers

By the time your loved one enters the later stages of Alzheimer’s disease, its impact is well established, having long since altered not only their own life, but that of your family and friends. It is a continuing journey characterized by a great deal of emotional ups and downs taking an enormous emotional and physical toll on all family members, but especially those who have taken on the role of caregiver.

Dr. Barry Reisberg, Director of the Fisher Alzheimer’s Disease Education and Research program at NYU Grossman School of Medicine has identified the seven stages of dementia. The last, Stage 7, is described as “very severe cognitive decline”. It represents the final leg of the journey, at which point an individual has lost most of their ability to function, both cognitively and physically. It can be characterized by the following:

• Bedridden and wheelchair bound.
• Totally reliant on others for care.
• Difficulty eating and swallowing.
• Loss of language, only sounds.
• Bladder and bowel incontinence.
• Increased risk of urinary tract infections and falls.
• Increased skin issues and wound risk.
• Aspiration and choking risk increases. May lead to pneumonia.

Stage 7 can last anywhere from weeks to a year or more. If this is the stage your loved one is experiencing, you know that they are now requiring round-the-clock care. Many families will have already transitioned their loved ones into an environment where they can be cared for by licensed memory care professionals who have developed expert hands-on experience and a deep understanding of how to meet the wide range of challenges presented at each stage of Alzheimer’s.

All families and caregivers will be greatly benefitted by having a clear understanding as to what this last stage of Alzheimer’s entails in terms of cognitive and physical decline as well as the ensuing behavioral and emotional changes to expect.

The Alzheimer’s Association has published an in-depth informative guide to help families like yours prepare yourself and your loved one for this final stage of their Alzheimer’s journey.

The guide includes a detailed list of practical tips for those caring for a loved one in late stage Alzheimer’s. We’ve summarized them below.

Meals:

• Keep them upright during and 30 minutes after meals to aid digestion.
• Soften or thicken foods for easier swallowing. Use soft foods, thickened liquids, yogurt, pudding, or ice cream.
• Encourage self-feeding if they are able. Use prompts or finger foods if utensils are difficult.
• Assist as needed. Alternate small bites with fluids and ensure each mouthful is swallowed before continuing.
• Promote fluids. Offer juice, soup, gelatin, or sherbet; check temperatures before serving hot liquids.
• Monitor their weight. Be sure to report sudden or significant loss to a doctor.

Bowel and bladder function:

• Set a bathroom schedule by tracking eating, drinking, and bathroom habits. Use a bedside commode if needed.
• Limit evening liquids. Reduce intake 2 hours before bed but keep fluids adequate during the day.
• Use protection. Adult briefs and bed pads can help prevent nighttime accidents.
• Monitor bowel habits. Constipation may occur after 3 days without a bowel movement. Add fiber or prunes and be sure to consult a doctor if it persists.

Skin and body:

• Change their position every 2 hours to ease pressure, boost circulation, and keep the body aligned. Use pillows for support.
• Learn safe lifting from a nurse or therapist. Never pull by the arms or shoulders.
• Keep skin clean and dry. Wash gently with mild soap, blot dry, and check daily for sores or irritation.
• Protect bony areas like elbows, heels, and hips with pillows or pads. Apply moisturizer gently without massaging.
• Prevent joint stiffness. With a doctor’s OK, do gentle range-of-motion exercises 2–3 times daily, especially after bathing.

Infection prevention:

• Maintain oral hygiene. Brush their teeth after meals, clean dentures nightly, and gently clean gums, tongue, and soft tissues to reduce pneumonia risk.
• Treat wounds promptly. Wash with warm soapy water, apply antibiotic ointment, and seek help for deep cuts.
• Prevent flu and pneumonia. Get annual flu shots for both of you. Consider a pneumococcal vaccine every 5 years.

Pain and illness recognition:

• Watch for physical signs, such as pale or flushed skin, dry gums, mouth sores, vomiting, fever, or swelling.
• Note nonverbal cues which may include gestures, sounds, or facial expressions like wincing.
• Track behavior changes. This includes anxiety, agitation, trembling, shouting, or sleep issues, which may indicate pain.

Nurturing your loved one’s senses will help preserve your emotional connection.  

During the later stages of Alzheimer’s, caregiving shifts to prioritizing comfort, dignity, and quality of life. Though speech and communication may be lost, a person’s core self can still remain, allowing for special moments of connection. Your loved one will shift from cognitive awareness of the world around them to a more sensory experience. That means your interactions should adjust to focus on stimulating their senses. Here are some tips:

• Hearing. Playing some of their favorite music or reading aloud from a book.
• Sight. Looking through old photos and memorabilia together or watching an old favorite movie or TV show.
• Taste. Preparing their favorite meals and desserts.
• Smell. Bringing fresh cut flowers up to them to smell. Rubbing scented lotion on to their hands.
• Touch. Brushing their hair or providing them with a soft blanket or pillow. Letting them stroke a gentle pet, such as a dog or cat.
• Multiple senses. Sitting outside together on a nice day so that they can smell the plants and feel a cooling breeze.

Stage 7 care is extremely challenging. Caregivers need and deserve respect and compassion.

Deciding on the best care for a loved one in the late stages of Alzheimer’s is often one of the most challenging choices families face. Care needs at this stage are extensive and will require experienced, compassionate professional nurses and caregivers. Those who have taken this journey often express that the best approach is to gather the facts, make the decision, and move forward without second-guessing.

This is where we can provide support, both practically and emotionally. Many of our nurses and care staff have a deep and personal connection to dementia having experienced it in their own families. We encourage you to reach out to any of our Anthem Memory Care communities with your questions and concerns. You are also welcome to drop in and visit us. We have knowledge, experience, and resources to help you and your family navigate all stages of your caregiving journey. We are here to help.