Here's what people will experience in advanced Alzheimer's disease's, how doctors recognize the disease's late stages, and how caregivers can navigate this transition.
Alzheimer’s disease is a complex journey, both for those experiencing it and their caregivers. Early in the condition, a person will experience mild memory problems and behavioral changes. Advanced Alzheimer’s may take years to appear. So, what are the indicators of late-stage Alzheimer’s, and how caregivers can identify them? How do doctors know when the disease has moved from its middle years into late stages? And what treatments and support are out there? Read on for expert-vetted guidance on how to navigate Alzheimer’s progression into the disease’s sadvanced stages.
What are the signs of moderate Alzheimer’s disease?
While every individual’s experience is unique, there are common symptoms that caregivers and health care professionals look for:
- Severe memory issues: One of the hallmarks of advanced Alzheimer’s and related forms of dementia is severe memory impairment. Individuals may gradually come to forget not only recent events but also basic life details, including their own identity.
- Behavioral changes: Agitation, aggression, mood swings, and restlessness can become more pronounced during this stage. These behavioral changes might also include repetitive behaviors — also known as perseverating.
- Disorientation and wandering: Advanced Alzheimer’s brings increased disorientation. Individuals may not recognize the time, place, or situation and may believe they are in a different era or location. One in six adults with dementia wander, and this poses safety concerns. Individuals may attempt to leave their homes or care facilities without understanding the risks involved and they may have a difficult time finding their way back. Studies show one in six adults living with Alzheimer’s goes missing at some point in a wandering incident.
- Sleep disturbances: Struggling to get good sleep is not uncommon for people even with mild and moderate Alzheimer’s, but especially in the disease’s latest stages, sleep patterns are disrupted, with irregular sleep-wake cycles and frequent nighttime awakenings becoming common.
What about advanced Alzheimer’s?
In addition to the above, people entering the later stages of Alzheimer’s disease might also experience:
- Difficulty performing activities of daily life: At the very start of Alzheimer’s, a person may just have mild cognitive impairment (MCI). They’ll still be able to follow most of their normal routines. In the middle stages of dementia, moderate symptoms do start to materially change the way a person moves through their day. They’ll need help with many of their day-to-day activities. In advanced Alzheimer’s, people require extensive assistance with activities of daily living (ADLs), which might include bathing, dressing, grooming, eating, and getting from one place to another. Independence in these tasks is lost.
- Problems with mobility: Advanced Alzheimer’s often leads to impaired mobility and motor skills. Individuals may have difficulty walking, sitting up, or even holding their heads up.
- Loss of one’s ability to communicate: Communication skills deteriorate significantly for people living with dementia, making it increasingly challenging for individuals to hold conversations or express their needs and emotions. Some may become non-verbal.
- Bowel and bladder control problems: Incontinence and loss of bowel functions are not uncommon in Alzheimer’s latter stages, so caregivers must be prepared to provide assistance with going to the bathroom and related hygiene.
- Trouble eating and swallowing, losing weight: Dysphagia, or difficulty swallowing, can result in an increased risk of choking and aspiration pneumonia. Trouble with eating can result in significant weight loss.
How to recognize late Alzheimer’s signs as a caregiver
Caregivers will play a vital role in recognizing advanced Alzheimer’s disease. Here are some strategies for identifying these flags and responding to the evolving needs of your loved one:
- Behavioral changes: Over 90 percent of people living with Alzheimer’s disease develop behavioral symptoms. Look for increased agitation, aggression, restlessness, or mood swings.In a live talk with Being Patient Dr. Dylan Wint, director of clinical operations at the Cleveland Clinic Lou Ruvo Center for Brain Health, said safety is the top priority when addressing a behavioral condition. “I do try and assess the extent to which this is something that is affecting the caregiver’s quality of life, or the patient’s quality of life, not because one is more important than the other but because the way of managing it may be very different,” Wint said. “Anytime we use a medication to treat behavioral symptoms, we’re exposing a patient to a risk because we’re putting a chemical in their body.” Document significant shifts in behavior to discuss with healthcare professionals.
- Communication challenges and severe memory impairment: Be attentive to difficulties in communication, such as the inability to find words or a lack of response to questions. Advanced Alzheimer’s often results in severe cognitive issues. If your loved one cannot recall essential details, including their own identity, close family members, or past events, it is indicative of the disease’s later stages. Dementia care expert and fellow of the American Occupational Therapy Association Teepa Snow provides tips on communicating with loved ones when their memory declines, including not arguing with them or correcting them, and instead orienting around preserving the relationship. In the latest stages of the disease, a person with Alzheimer’s may be non-verbal — but there are approaches to communicating in this stage, too, such as adaptive interaction.
- Lack of mobility: Watch for signs of severe mobility impairment. Because of reduced mobility, a patient’s body can become vulnerable to infections. To help address this heightened risk, Dr. David Wolk, Penn Memory Center co-director, advises that caregivers take extra measures to help keep patient’s teeth and mouth clean, treat cuts with an antibiotic ointment immediately, and make sure the patient gets their flu shot each year.
- Dysphagia and losing weight: Keep an eye on significant drops in weight and look out for eating problems.These can manifest as struggles with utensils or problems swallowing. Caregiving experts have a number of strategies to make eating safer and less stressful for all involved, like paying attention to posture, and cutting down on distractions at meal time.
- Disorientation and wandering: If your loved one becomes severely disoriented, believing they are in a different time or place, it is a clear sign of advanced Alzheimer’s. As a caregiver, be vigilant and implement measures to prevent wandering, such as secure locks and alarms. Alert family members, neighbors, and local authorities if you are unable to locate your loved one. Experts recommend a number of strategies for helping to curtail wandering, including keeping a daily routine, avoiding busy or hectic areas, taking precautions such as hiding car keys, and even using tech devices to monitor loved ones and prevent them from going missing.
How doctors diagnose late-stage dementia
The diagnosis of Alzheimer’s typically involves a comprehensive assessment by healthcare professionals. Doctors use various tools and assessments to help make a diagnosis,:
Clinical evaluation: Doctors conduct a thorough clinical evaluation that includes reading up on a patient’s medical history, assessing current symptoms, and testing cognitive function through a) Cognitive assessments: Standardized cognitive tests, such as the Mini-Mental State Examination (MMSE), are employed to evaluate cognitive abilities and detect cognitive decline; and b) neuroimaging: Doctors read brain imaging scans — like MRI or CT scans — to assess brain structure and rule out other potential causes of cognitive decline.
Increasingly, blood tests are also becoming part of the diagnostic process, helping doctors to identify any underlying medical conditions or factors that may contribute to the individual’s symptoms.
But outside of these clinical methods, doctors also rely on caregiver input when diagnosing Alzheimer’s and other forms of dementia. Caregiver observations and input are invaluable in the process — they provide insights into the individual’s daily functioning and changes in behavior.
Clinical treatments and care for advanced Alzheimer’s disease
Clinical treatment options for people who live with this stage of advanced Alzheimer’s disease are limited, and cognitive and functional decline are both in full swing. However, caregivers and health care providers can focus on the following strategies to help make a loved one’s day-to-day as comfortable as possible — and to make things a bit easier for the care partner or caregiver, too.
- Drugs for symptom management: There is presently no way to stop or slow disease progression once a person is in the middle and later stages of Alzheimer’s disease, but there are ways to alleviate symptoms and improve quality of life, both for patients and for caregivers. There are a limited number of FDA-approved prescription medications that have been trialed and proven safe for people living with Alzheimer’s disease, including for symptoms like agitation. There are also a number of drugs that are frequently prescribed to dementia patients off-label. These can worsen some symptoms or pose other dangers to health (for example, antipsychotics are linked to higher rates of hospitalization among people living with dementia) when dosages or combinations are wrong, so consult with your physician and where possible, seek a second opinion.
- Music therapy: Addressing behavioral symptoms through non-pharmacological interventions can also enhance the individual’s quality of life. Music can ease agitation and other psychiatric symptoms of dementia. While Alzheimer’s disease damages the areas of the brain that are involved in processing memory, “familiar music initially gets processed in deeper areas of the brain more resilient networks in the brain that are connected to long term memory retrieval” Concetta Tomaino, executive director (and co-founder) of the Institute for Music and Neurologic Function and board member of the Music & Memory, told Being Patient. Familiar music can help people living with dementia to recall memories by triggering an emotional response.
- Comfort and safety: Ensuring the person’s comfort and safety is paramount. Creating a calm and supportive environment can help manage distressing symptoms. Remove anything in the environment that can be triggering to the person, such as loud sounds, and keep decor simple so there are fewer cords and fragile objects. Designate a room in the house that can be a quiet space for the person with dementia to retreat to for a socialization break.
- End-of-life care: In advanced Alzheimer’s disease, discussions about end-of-life care, including the use of life-sustaining treatments and advanced directives, are essential. Hospice services can provide comfort and support during the final stages of the disease, focusing on pain management and emotional care.
- Support for caregivers: Caregivers should receive support, education, and respite care to manage the challenges of caring for individuals in advanced stages of Alzheimer’s. Support groups are available for caregivers of loved ones living with mild to advanced Alzheimer’s and dementia.