Late Stage Dementia and Alzheimer's Care

While Alzheimer’s disease accounts for up to 80% of dementia cases, there are also other forms of dementia. Additional types of dementia include, but are not limited to, vascular dementia (the second most-common), Lewy Body Dementia, and mixed dementia.

According to a Caring.com survey, people with dementia are more likely to live at home within the first three years of a dementia diagnosis. Similarly, it is more common for people with end stage dementia to spend their final days at home rather than at a nursing home or in a hospital. In fact, according to a 2022 study, almost half of seniors in home hospice care have dementia.

Alzheimer’s disease and dementia are neurodegenerative progressive diseases that worsen over time. Progression between different stages occurs differently depending on the type of dementia you or your loved one has. However, all dementias — including Alzheimer’s — negatively impact a person’s ability to think, behave, and remember. Some dementias also have unique physical and mental symptoms in their later stages. 

Commonly shared symptoms of late-stage dementia include:

 

• Severe Memory Loss and Disorientation: : People with late or end stage dementia may no longer recognize their family and become unfamiliar with their surroundings. They may lose awareness of time, place, and even their own identity.
• Limited Physical Functioning: Late stage dementia care may involve assisting a loved one who is immobile, has lost bowel or bladder control, struggles to eat or swallow, and can no longer communicate. 
• Increased Risk of Infections and Skin Breakdowns: Impaired swallowing may lead to choking or aspiration pneumonia. Limited mobility may cause pressure sores (bedsores), while incontinence increases the risk of urinary tract infections. 
• Emotional and Behavioral Changes: Late stage dementia may cause emotional withdrawal, anxiety, agitation, or a complete lack of responsiveness.
• Complete Dependence on Caregivers: Individuals in late stage dementia require 24/7 support for all daily activities, including personal care, nutrition, and medical monitoring.

 

Additional symptoms for various  late-stage dementia:

 

• Additional Physical Symptoms: For individuals with vascular dementia, strokes are common and may lead to further complications such as muscle weakness, reduced coordination, and difficulty with balance or walking. Vision problems, including trouble with depth perception or visual processing, may also occur, increasing the risk of falls and injuries.
• Additional Mental Symptoms: Those in the late stages of Lewy Body dementia may experience vivid hallucinations — often visual — as well as severe fluctuations in attention, alertness, and cognition. These changes can be sudden and unpredictable, making care especially challenging.
• Mixed Dementia Symptoms: Individuals with mixed dementia — commonly a combination of Alzheimer’s disease with either Lewy Body or vascular dementia — may display a wide range of symptoms from both types. This can include memory loss, confusion, hallucinations, coordination issues, and more, depending on which brain changes are most prominent. Because of this overlap, mixed dementia often progresses more rapidly and presents more complex care needs.

In late-stage Alzheimer’s, people’s needs are extensive, and their ability to perform basic functions or interact with their environment declines. They will eventually require around-the-clock care and need help to walk or eat. People with late-stage Alzheimer’s may develop involuntary muscle spasms, skin issues such as pressure sores, and struggle to communicate feelings of discomfort. You can also expect someone with late-stage Alzheimer’s to exhibit: 

 

• Increasing Personal Care Needs: In the late stage of Alzheimer’s, individuals will require continual help with activities of daily living (ADLs), such as getting dressed, toileting, and bathing.   
• Limited Mobility: In this stage, a person may go from being able to walk with some assistance to completely losing their walking ability.  
• Loss of Function: Issues with incontinence, eating, and swallowing are associated with the later stages of Alzheimer’s. 
• Infection Susceptibility: Choking on food may introduce food into the lungs and lead to pneumonia, which can be fatal.   
• Myoclonus: Involuntary muscle spasms may develop in Alzheimer’s later stages. These can be treated with certain prescription medications. 
• Skin Problems: Trouble with mobility can lead to pressure sores if someone with Alzheimer’s is not moved every one to two hours. Commonly affected areas include the back of the head, lower back, hips, and heels of the feet. 
• Communication Issues: A person with late-stage Alzheimer’s may not be able to communicate their thoughts or feelings. Listen for groans, sighs, or strange body positions that may indicate a loved one is in pain. Medication may help. 

A person living with late stage dementia may need assistance eating, so they maintain a healthy weight and can swallow their meal without choking. Maintaining weight is important for multiple reasons, especially so your loved one can take their medications. People with end stage dementia must also drink sufficient fluids to avoid constipation, a delicate balance if your loved one struggles with incontinence. 

Keeping an eye out for signs of lung or skin infections — and for indications that your loved one is uncomfortable or in pain — may also be necessary when providing end of life care dementia services. 

Here are a few things to watch out for as a late-stage dementia caregiver:

 

• Nutritional needs: Ensuring that a loved one receiving late stage dementia care is eating is among the most important tasks a caregiver has during this stage. It is common for people with late-stage dementia to forget to eat or to not find food appetizing. Include favorite foods on the menu and consider adding a little sugar to encourage a person with late-stage dementia to finish a meal. Make a doctor’s appointment if weight loss occurs, to check that it’s not due to malnutrition. 
• Meal assistance: Make sure a loved one with dementia sits upright while eating, to avoid choking if they cannot swallow easily. People who need end of life care dementia services are often more susceptible to infections; choking on food can result in pneumonia. To avoid this or other complications, offer soft foods, thicken liquids with cornstarch or gelatin, and assist with each step of the eating process as necessary. 
• Fluid intake: People with late-stage dementia may forget to drink fluids or not recognize signs of thirst. If swallowing water is an issue, alternatives such as gelatin, soup, or juice may be better options. Switching between small bites of food and small sips of fluids may also assist with eating. 
• Bowel and bladder control: Consider a bedside commode if your loved one with late-stage dementia has difficulty getting to a toilet. It may be necessary to maintain a set toileting schedule, walk your loved one to the bathroom, and guide them through the toileting process. Cut down on liquids consumed two hours before bed, and use disposable or washable protective gear to avoid or minimize the effects of any accidents. 
• Constipation watch: Daily bowel movements are not required, but if your loved one does not pass solid waste for three days, this is a cause for concern. While this may be treatable by adding sources of fiber to their diet, consult a doctor after three days with no stool. 
• Infection monitoring: Make sure wounds or sores are disinfected as soon as possible. If a wound shows signs of an infection or is particularly deep, consult a doctor. People with late or end stage dementia are particularly at risk for developing bedsores and may need help changing their position frequently. If sores develop and are accompanied by a fever, become warm, swell, or begin to drain, visit a medical professional. 
• Pneumonia watch: Aspiration pneumonia is a leading cause of death among people with Alzheimer’s. However, the flu and poor oral hygiene can also result in pneumonia in people with end stage dementia. Caregivers and their loved ones should be updated on their flu vaccinations. Caregivers should also keep an eye out for signs of aspiration pneumonia and other types of pneumonia infections. 
• Pain management: Loved ones receiving end of life care dementia services may be unable to communicate. However, they may show other signs of pain or discomfort. These may include looking pale or flushed, becoming feverish or trembling, throwing up, or not sleeping. Sounds, pained facial expressions, or increased anxiety or agitation can also indicate feelings of discomfort.

There are two primary settings where individuals can receive care during the late stages of dementia: at home or in a memory care facility. The facilities can be standalone, or a specialized floor or wing of an assisted living facility or nursing home. 

While some people choose to live in an independent living facility when they are still overall healthy and then transition to an assisted living facility or nursing home as their health needs increase, people with dementia tend to remain at home despite changes in their care needs. In 2023, Healthline reported that dementia-related deaths in medical facilities have decreased while the number of deaths at home has increased. This data indicates that people with end stage dementia are electing not to go into a facility.

Receiving end of life care dementia services while surrounded by loved ones may bring these individuals a sense of comfort. But the loved ones — the dementia caregivers — need support too. Home health care aides can see to the medical needs of someone with end stage dementia, while respite care can support the caregiver’s mental health.

However, some families may worry about the costs of home care as dementia progresses and care needs increase. They may also worry that they cannot provide sufficient care and supervision at home and that more specialized memory care in a secure facility would be a safer option for their loved one.

Standalone memory care facilities offer specialized memory care services to residents with dementia in a secure environment. They provide residents with predictable routines designed to reduce stress and anxiety. Memory care facilities also have procedures and mechanisms that keep residents safe and prevent wandering. 

A small staff-to-patient ratio helps these communities accommodate residents’ needs. Staff also typically undergo special training in memory care, which may include late stage dementia care as well as care for those with aggressive dementia. 

Alternatively to standalone facilities, other facilities such as assisted living facilities or skilled nursing homes may also offer memory care in a special designated unit managed by staff trained in dementia care.  

Follow recommended guidelines when selecting the best memory care facility for your loved one, and ensure the facility has the memory care amenities they may need. When considering this memory care option, also look into resources that can help cover the costs of care. 

In the later stages of Alzheimer’s and other forms of dementia, symptoms typically include significant memory decline and loss of control over bodily functions. For some families who have a loved one with late-stage dementia, this increased need leads to the decision to transition their loved one to a memory care facility, where staff are trained to manage the complexities of late-stage dementia. Others may choose to continue caregiving at home, often with the help of professional home health services and continuous monitoring to ensure safety and comfort. 

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