Alzheimer’s Care

Alzheimer’s is a progressive disease of the brain, which over time results in loss of memory and cognitive abilities necessary to live a normal life. Alzheimer’s is the number one cause of dementia and worsens over time.

Because of the nature of the disease, getting the proper care for those with Alzheimer’s is crucial. Alzheimer’s care may refer to in-facility treatment or treatment at home, as there are a variety of care options to suit nearly any patient. Finding the right type of treatment isn’t impossible, but may be difficult at times. The better your understanding of the disease, the better you’ll be able to make informed decisions regarding Alzheimer’s care.

What is Alzheimer’s?

Alzheimer’s is a progressive type of dementia This disease affects thinking, memory, and eventually behavior. Over time, symptoms will grow severe enough to interfere with one’s daily life and daily tasks. Alzheimer’s is a common cause of dementia. Dementia is a general term for loss of cognitive abilities and memory loss which are severe enough to interfere with a normal life. Alzheimer’s has no cure and worsens over time.

The majority of people who suffer from Alzheimer’s are 65 years old or older, though Alzheimer’s is not a normal part of aging, and not all who suffer from the disease are seniors. Alzheimer’s can affect young people too, although it’s much less likely. While there is no cure for Alzheimer’s there are some medications that may offers some benefits.

is one treatment (aducanumab/Aduhelm) that has demonstrated that by removing amyloid from the brain, we may be able to slow the decline of memory loss and loss of cognitive abilities.

What Are the Signs and Symptoms of Alzheimer’s?

Understanding the signs and symptoms of Alzheimer’s is important when it comes to early intervention and treatment. There are many symptoms of Alzheimer’s, some of which are physical and some of which are psychological.

Psychological Signs

• Perhaps one of the first symptoms of Alzheimer’s is the failure to remember newly learned information. This symptom will progress to not remembering friends and family.
• Trouble concentrating
• Difficulty with words, whether it be understanding them, finding the right words, or completing sentences.
• Getting lost in places that are familiar.
• Restlessness
• Depression
• Aggression and anxiety, as well as agitation.
• A distrust in others, even those once trusted.
• Loss of inhibitions
• Withdrawal
• Disinterest in things they used to enjoy.
• Hostility
• Mood swings
• Disorientation

Physical Signs

• Problems with movement.
• Problems with coordination.
• Muscle stiffness.
• Dragging of feet, or shuffling when walking.
• Weight loss.
• Incontinence.
• A change in sleep patterns, or insomnia.
• Muscle twitching.
• Difficulty swallowing.
• Difficulty speaking.
• Difficulty walking.

What Are the Three Stages of Alzheimer’s?

Alzheimer’s progresses in three main stages known as early, middle, and late. Sometimes these stages are also referred to as mild, moderate, and severe. Because the disease affects people in different ways, each person may experience symptoms and stages of the disease differently. Additionally, a final stage as known as “End Stage Dementia”  can be described which can be useful for hospice eligibility.

1. Early Stage

In the early stage of Alzheimer’s, a person will still function rather normally. They’ll continue to drive, and live independently. Some may not even know that they are in the early stages of the disease yet, because so little has changed. However, they’ll notice little memory lapses, such as forgetting where they put common items or forgetting familiar words. Friends and family may notice symptoms at this stage sooner than the affected individual. Common difficulties associated with early Alzheimer’s include:

• Coming up with the right word to use.
• Remembering names when meeting new people.
• Coming up with the right name to use in conversation with someone they’re familiar with.
• Having difficulty performing or completing tasks, whether in social or work situations.
• Forgetting material that was just read.
• Losing objects, or forgetting where common items were stored.
• Having trouble planning or organizing things.

2. Middle Stage

The middle or moderate, stage of Alzheimer’s is the stage that most people will stay in the longest. As the disease continues to progress, greater care will be required. During this stage, the disease will continue to progress, and the affected will begin to struggle with daily life. Common symptoms associated with the middle stage of Alzheimer’s include:

• Confusion of words.
• Sudden outbursts of emotion, especially anger or sadness.
• The patient may act in strange and unexpected ways.
• Being forgetful of events in their personal history.
• Feeling moody and withdrawn. This is especially true in highly stimulating situations.
• Being unable to recall information about themselves, such as their phone number or high school that they attended.
• Confusion about the day and year.
• Needs help choosing appropriate clothing for the day.
• Experiencing issues with controlling their bladder and bowels.
• Changes in sleep patterns, and sometimes the development of insomnia.
• Showing an increased tendency to wander off, sometimes getting lost.
• Demonstrating behavior changes and personality changes.
• Developing rituals such as hand-wringing or tissue shredding.
• Issues with delusions and becoming suspicious.

3. Late Stage

The late stage of Alzheimer’s is the last stage, and the most severe. Individuals in this stage lose the ability to respond to their environment, carry on a conversation, and eventually will lose the ability to control their movements. An individual in this stage may still say words and phrases, but communication becomes extremely difficult. Those in late-stage Alzheimer’s need extensive care. Some common symptoms of late-stage Alzheimer’s include:

• Lose awareness and responsiveness to their surroundings.
• Lose the ability to communicate, including the ability to communicate pain.
• Experiences changes in physical abilities such as walking, talking, sitting, and eventually
• Becomes exceptionally vulnerable to infections, especially pneumonia.
• Requires around-the-clock care to live.
• Loses ability to live without help eating and drinking.

4. End Stage

Late stage and end stage Alzheimer’s can overlap considerably. Some of the changes that can been seen when life expectancy is limited and hospice could be appropriate include…

• Weight loss: As the disease progresses, mechanism that drives hunger in the brain can fail. This leads to a decrease in appetite and intake. “Pocketing” is a common finding and refers to when people hold food in their mouths without swallowing.
• Recurrent Dehydration: As with food, thirst mechanism can be also severely impaired. Hospital admission for dehydration and kidney failure is common. Unfortunately, even with hydration the disease continues to progress and people may be able to sustain themselves without artificial means.
• Recurrent Pneumonia: As the brain degenerates, the swallow reflex may become discoordinated.  This can lead to food and drink entering the lungs. This is known as aspiration. due to the nature of the disease, when aspiration occurs, a person may not feel it and may not cough. This can lead to pneumonia. Even if treated, it usually reoccurs.

What Is Alzheimer’s Care?

Alzheimer’s care is a broad term that refers to the care that an individual may need as their disease progresses. Each individual may require different levels of care at different points. There are a variety of different care options available for those with Alzheimer’s, including at-home options and care facility options. Because everyone is different, each Alzheimer’s care plan may look different as well.

What Are Benefits of Alzheimer’s Care?

There are a variety of benefits of Alzheimer’s care, both for the patient and for the family of the patient. Depending on the stage of Alzheimer’s which a person is currently experiencing, care will look a little different. Alzheimer’s affects an individual by causing dementia, memory loss, confusion, aggression, and lack of self. The disease slowly progresses to affect the physical as well, eventually affecting the ability to recognize one’s surroundings, swallowing, and general life without extensive care. Because of this, Alzheimer’s care is crucial and comes with a variety of benefits.

In the early stage of Alzheimer’s patients and their families may expect the need of a little extra emotional support. Both the individual and their family may be feeling a little scared and upset, especially as symptoms begin to become more evident. Care at this stage is more emotional and mental than physical. Those in the early stage may need help planning, remembering things, and may need help with difficult tasks like managing a budget. Those in early-stage Alzheimer’s should also set a care plan in place and should discuss with the family what they want as the disease progresses.

Family and friends may encourage the individual to continue living as normally as possible, but should be prepared to step in and provide help, whether physically or emotionally, as needed. This may look like help preparing meals, help managing finances, or encouragement and a lot of extra love.

For later stages of Alzheimer’s, it’s a good idea to set in place a plan for care as the disease progresses. This may include in-facility care, and end-of-life care, such as Hospice care services. However, no matter which stage of Alzheimer’s one is currently in, the benefits are innumerable.

Those who receive appropriate care for their Alzheimer’s may find it easier to navigate the disease, as will their families. They also have a greater chance of slowing the progression of the disease, even if there is no cure. Alzheimer’s care is crucial for each stage, though care for each stage will look as different as the stage itself. It’s important to consider all of your options, and consider which forms of care work best for the individual and their family as well.

What Are the Alzheimer’s Care Options?

There are a variety of different Alzheimer’s care options, and each stage may require a different option. It’s always wise to become informed of the different care options, that way the best choice may be made at each stage. Sometimes, Alzheimer’s care consists of more than one method, and sometimes one method is all that is needed or desired.

1. Assisted Living 

This type of facility uses normal nurses and hired professionals to ensure that the individual makes it to meals, and is checked upon. They ensure a normal schedule and life is kept, helping as much or as little as needed.

What makes it different?

• Allows individuals to live a relatively normal life, just with extra help.
• Allows individuals to be housed with similar individuals, providing a support group.
• Provides a safe environment without extra restriction

Benefits

• Allows the individual to remain somewhat independent.
• Allows for extra care when needed.
• Typically, slightly less inexpensive than memory care facilities

Disadvantages

• Typically not reimbursed by Medicare or standard health insurance policies
• Units are not locked and therefore not appropriate for those with wandering behaviors

2. Memory Care Facility

A memory care facility is sort of like an assisted living community but with a little extra help. It typically employs additional staff with expertise in dementia care and notably “locked units”. This prevents residents from wandering and getting lost.

This option of care is quickly becoming more popular, and costs just slightly more than a normal assisted living facility would on average, at $6,935 per month. However, this cost is still less than the average monthly cost of a nursing home. Costs will vary by state, as well as the level of care provided.

What Makes It Different?

• This option allows a middle-ground between assisted living and nursing facilities.
• Especially situated for Alzheimer’s patients.
• These units are typically “locked”. This means that while patients are free to roam in the units, they wouldn’t be able to exit without supervision.

Benefits

• Creates a safe environment for the individual as their disease progresses.
• Gives the individual some semblance of normality.

Disadvantages

• Costs more than an assisted living facility.
• Levels of care may vary.
• Removes the individual from their familiar home setting, which may be distressing.
• Typically not reimbursed by Medicare or standard health insurance policies.

3. Alzheimer’s/Dementia Care Centers

An Alzheimer’s care center is a memory center and operates just or exactly like one. These units may also be known as dementia care homes. These centers are designed to provide adequate care and living for every stage of Alzheimer’s. The costs are about the same as memory centers, as they are functionally the same.

What Makes It Different?

• Alzheimer’s care centers work just like memory centers, as standalone care facilities meant to help the individual at every stage.
• These facilities are different from nursing homes or other care facilities because they are specialized to help people with Alzheimer’s and dementia.
• They provide extra help and activities that may help slow the progression of the disease.

Advantages

• Provides a safe environment for the individual.
• Offers an environment that reduces excessive and stressful stimulation.
• Care through every stage.
• Offers a strong support network.

Disadvantages

• Removes the individual from their home.
• May be costly.
• May not be available in your area, or close to family.
• Typically not reimbursed by Medicare or standard health insurance policies.

4. Nursing Homes With Memory Care Units

A nursing home is a comprehensive facility that offers complete care for someone who otherwise would not be able to safely live alone. Sometimes, these facilities offer memory care units that specialize in the care of those with Alzheimer’s. These units may cost extra, compared to the average cost of a nursing home, which sits around $10,000 per month, on average.

What Makes It Different?

• Offers more comprehensive care due to the placement within a nursing facility.
• Provides specialized care within a greater medical setting.
• Offers adequate care for those with Alzheimer’s as well as other daily issues.

Advantages

• Offers extra care than a memory center or dementia home.
• Provides care that isn’t Alzheimer’s based as well.
• Creates a strong network of support and care.
• May be readily available in most areas.
• May be covered by Medicaid programs (varies state by state)

Disadvantages

• Depending on the state and location, some facilities rely on Medicaid reimbursement. This can sometimes lead to a lack of resources.
• May cost more than all other care options if paid out of pocket.
• Is often more comprehensive, which may come with more restrictions.
• Care isn’t as focused, and therefore may be lacking in certain areas.

5. Dementia Day Care

Dementia Day Care facilities are pretty much what they sound like. These facilities act as an adult daycare for adults who may need extra help or stimulation throughout their day. They are not a substitute for a facility and aren’t appropriate for those in mid-moderate or late-stage Alzheimer’s. The cost for these programs usually averages about $61 per day, for an 8 to 10 hour day. These facilities work best for families who work, making daytime care difficult.

What Makes It Different?

• Provides tools and activities to help those with dementia during the day.
• Provides a solution that doesn’t require the individual to enter an in-facility treatment.
• Acts as the middle ground of treatment for those without severe dementia.

 Advantages

• Provides meals and activities throughout the day.
• Allows the individual to live a normal life while remaining safe and receiving care.
• Allows the individual to remain in the home longer.
• Relatively affordable compared to other options.

Disadvantages

• Provides a temporary solution for care.
• Daily costs may not suit some families.
• May not be available in all areas.
• Doesn’t offer more comprehensive care solutions.

6. Alzheimer’s Care At Home (With Dementia Caregivers)

This type of Alzheimer’s care is popular with those who would like to remain living in their own home, or with family. This care option allows the individual to remain at home but has a caregiver come in, usually once per day, or sometimes around the clock, to provide care. These services vary in price, depending on location and amount of care needed.

What Makes It Different?

• Allows the individual to remain at home.
• Utilizes trained home-health professionals.
• Makes family-care integration easier.

Advantages

• Allows the individual to remain in a familiar home environment.
• Allows family to remain close to the individual.
• Provides adequate care, which can easily be adjusted.
• Available in all areas.

Disadvantages

• It may cost more overall than a facility.
• May be more stressful for others living in the home.
• Medical equipment may need to be set up in the home.

7. Alzheimer’s Care For Veterans

Alzheimer’s care for veterans may look a little different than care for those who are not veterans. This is because plenty of veterans suffer from PTSD or TBIs. Because of this, veterans with Alzheimer’s may require a little extra care than those without. Veterans with PTSD are twice as likely to develop dementia than their peers without PTSD. Care may require extra mental health resources as a result.

What Makes It Different?

• Provides care formulated for those with PTSD or TBIs.
• May be covered financially more easily.
• Offers a comprehensive form of care.

Advantages

• Offers extra mental health care and resources.
• Helps veterans process their disease easier.
• Provides comprehensive care.
• Is often covered by the VA.

Disadvantages

• May require in-facility treatment.
• May have to jump through hoops to obtain.
• May come with long wait times and waiting lists.

8. Dementia Care with Hospice

This level of care can be provided to anybody with end stage disease. It can take place either at home or in a facility. The hospice team which at minimum includes physician, nurse, social worker, and chaplain work together to coordinate care. The goal of care is to maximize quality of life and minimize suffering.

What Makes It Different?

• Intensive care designed to support those at the end of life.
• Ideally, enrollment as soon as eligible provides the greatest benefit.
• Can take place at home, facility or in-patient settings.

Advantages

• This is covered under Medicare benefits. This includes all medications required to maintain comfort, medical equipment, oxygen, the entire hospice team and grief counseling for the family.
• Access to an interdisciplinary team specialized in symptom management and care at the end of life.
• Crisis management including 24/7 support.
• Typically, the most intensive support one can receive without paying out of pocket.

Disadvantages

• Most meet eligibility criteria to enroll
• Does not provide 24/7 non-medical care such assistance with personal needs

What Are The Questions to Ask Alzheimer’s Care Providers?

Finding the right care provider for someone with Alzheimer’s is a process. Much like other care providers, you may not find the one that suits your situation best right off the bat, this is why it’s crucial to ask questions and to gain all of the information you can about a provider before working with them. Some questions to ask include:

• How much experience do the provider and staff have?
• Are the staff certified?
• What will be done to ensure the safety of the patient?
• How are their care plans created? Are they often reviewed?
• How involved is the family allowed to be?
• Are background checks completed on the provider and staff?
• What are all of the forms of care provided? Do they offer any specialty care?
• What are the costs, and will you be notified of changes?
• Who is the backup provider? Can you meet them?
• Do they have any references? Get at least 3 if possible.
• Can you visit the facility?
• Do you allow remote video monitoring?

FAQ

1. What does it feel like to have Alzheimer’s?

Alzheimer’s may not feel the same for every individual. The way it feels to have the disease also depends on which stage the disease is at. Overall, those with Alzheimer’s may feel foggy, confused, scared, tired, or even in pain, depending on the stage.

The artist William Utermohlen’s works are powerful representation of the disease progress: https://mymodernmet.com/william-utermohlen-alzheimers-self-portraits/

2. Why is Alzheimer’s deadly?

Alzheimer’s is a brain disease categorized by the degradation of areas of the brain. This overtime affects memory, emotions, movements, and life. Over time, Alzheimer’s will impair basic functions, eventually resulting in the ability to swallow and eat. The brain sends signals to our bodies that allow us to remain alive, and do what we need to do to remain alive. When our brain becomes impaired, so does our body. Over time, this slowly impairs bodily functions, until they eventually stop working altogether. The life expectancy for someone with Alzheimer’s is usually three to eleven years after diagnosis, though some have lived as long as twenty.

3. Is Alzheimer’s treatable?

While Alzheimer’s currently has no cure, there are certain things one can do to slow the progression of the disease. These treatments may include clinical trials, medications, brain exercises, diet changes, and more. The sooner Alzheimer’s is diagnosed, the better.

4. Does Medicaid cover Alzheimer’s care?

Covered costs vary state by state and may include treatment facilities and memory centers.

5. What to do when a patient with dementia refuses help?

It’s never easy to admit that something is wrong with you, especially something that you can’t fix. If someone you love is refusing to get help for dementia, you may want to see about having them speak with a counselor. You may also want to call the Alzheimer’s Association Hotline, which provides 24/7 advice and help at 800.272. 3900. If all avenues are exhausted, you may need to forcibly enter the patient into treatment with the help of your state’s adult welfare and protection services.

6. What job titles/specialists are involved in Alzheimer’s care?

Alzheimer’s care is comprehensive and often requires a team of trained staff. Some individuals that may be involved with Alzheimer’s care include MDs, LPNs, RNs, Neurologists, physical therapists, counselors, psychiatrists, and more. Home Health Aides and Certified Nursing Assistants may help Alzheimer’s patients with the activities of daily living, including personal care.