This is an article for families and caregivers to have a better understanding of dementia. There are many types of dementia with the most common being Alzheimer's which makes up approximately 60% of the cases of dementia. Each type has its particularities, but all involve an increasing inability to make safe choices regarding daily activities of living.

Dementia in General

Dementia is a word that describes a group of symptoms that affect how well a person can think, remember, and do everyday activities. Dementia is not a normal part of getting older, and it is not caused by one single disease. There are many different causes of dementia, and some of them, like Korsakoff's dementia mentioned below, can be treated. People with dementia may have problems with memory, communication, reasoning, and emotions. They may also act differently than they used to or see things that are not there. Loved ones with dementia are aging physically, but mentally, emotionally, and functionally regressing to that of an unborn baby where they need complete care to live. Dementia can be hard to deal with, both for the person who has it and for their family and friends. That is why it is important to learn more about dementia and how to support people who have it.

Types of Dementia

There are currently twelve (12) known types of dementia:

  1. Alzheimer's disease is the most common type of dementia. It affects about six out of ten people with dementia (60%). Alzheimer's disease damages the brain cells and makes them die. This makes the brain shrink and have fewer connections. People with Alzheimer's disease have trouble remembering things, especially recent events. They may also get confused, lose their sense of time and place, and have changes in their mood and personality. Alzheimer's disease gets worse over time and there is no cure for it. But there are medicines and other ways to help people with Alzheimer's disease live better.
  2. Vascular dementia is the second most common type of dementia. It affects about two out of ten people with dementia (20%). Vascular dementia happens when the blood vessels in the brain get damaged or blocked. This reduces the blood flow to the brain and causes brain cells to die. People with vascular dementia may have problems with thinking, planning, and organizing. They may also have trouble speaking, walking, and controlling their emotions. Vascular dementia can happen suddenly after a stroke, or gradually over time. The symptoms and the speed of progression depend on the cause and the location of the damage in the brain. Vascular dementia cannot be cured, but some of the causes can be prevented or treated. For example, controlling high blood pressure, , and cholesterol can lower the risk of vascular dementia.
  3. Lewy body dementia is another common type of dementia. It affects about one out of ten people with dementia (10%). Lewy body dementia is caused by abnormal protein deposits called Lewy bodies that build up in the brain. These deposits affect the brain cells that control memory, thinking, and movement. People with Lewy body dementia may have problems with attention, alertness, and visual perception. They may also have , which means seeing or hearing things that are not there. They may also have symptoms of Parkinson's disease, such as tremors, stiffness, and slowness. Lewy body dementia can vary from day to day and can be hard to diagnose. There is no cure for Lewy body dementia, but some medicines and other treatments can help with the symptoms.
  4. Frontotemporal dementia is a rare type of dementia that affects mostly younger people, between the ages of 45 and 65. Frontotemporal dementia is caused by damage to the front and side parts of the brain. These parts of the brain are responsible for personality, behavior, and language. People with frontotemporal dementia may have changes in their personality and behavior. They may act inappropriately, lose interest in things, or become more impulsive. They may also have problems with speaking, understanding, and writing. Frontotemporal dementia can be inherited, which means it can run in families. There is no cure for frontotemporal dementia, but some medicines and other therapies can help with the symptoms.
  5. Huntington's disease is a genetic type of dementia that affects mostly younger people, between the ages of 30 and 50. Huntington's disease is caused by a faulty gene that makes the brain cells die. This affects the brain cells that control movement, thinking, and emotions. People with Huntington's disease may have involuntary movements, such as jerking, twitching, or writhing. They may also have problems with memory, concentration, and judgment. They may also have changes in their mood and personality, such as depression, irritability, or aggression. Huntington's disease gets worse over time and there is no cure for it. But there are medicines and other ways to help people with Huntington's disease cope with the symptoms.
  6. Korsakoff dementia is a type of dementia that is caused by a lack of vitamin B1, also known as thiamine. Vitamin B1 helps the brain use energy from food. Without enough vitamin B1, the brain cells cannot work properly and may die. Korsakoff dementia is often linked to alcohol abuse, but it can also happen for other reasons, such as malnutrition, infection, or cancer. People with Korsakoff dementia have severe problems with memory, especially forming new memories. They may also make up stories or facts to fill in the gaps in their memory. This is called confabulation. They may also have problems with coordination and balance. Korsakoff dementia can be prevented by eating a balanced diet and avoiding alcohol. It can also be treated by taking vitamin B1 supplements and stopping alcohol use. Some people with Korsakoff dementia may recover partially or fully, but others may have permanent damage.
  7. Limbic-predominant age-related TDP-43 encephalopathy (LATE) is a newly discovered type of dementia that affects mostly older people over the age of eighty. LATE is caused by a protein called TDP-43 that builds up in the brain and damages the brain cells. TDP-43 is normally found in the nucleus of the cell, but in LATE, it moves out of the nucleus and forms clumps in the cytoplasm. This affects the brain cells that control memory and emotions. People with LATE have problems with memory, especially recent memory. They may also have mood changes, such as depression or . LATE can be hard to tell apart from Alzheimer's disease, but it tends to progress more slowly and affect less areas of the brain. There is no cure for LATE, but some medicines and other treatments may help with the symptoms.
  8. Normal pressure hydrocephalus (NPH) is a type of dementia that is caused by a buildup of fluid in the brain. The fluid, called cerebrospinal fluid (CSF), normally flows around the brain and spinal cord, and protects them from injury. But in NPH, the fluid does not drain properly and puts pressure on the brain. This affects the brain cells that control walking, thinking, and bladder control. People with NPH may have problems with walking, such as shuffling, slowing down, or losing balance. They may also have problems with memory, concentration, and reasoning. They may also have problems with holding urine or having accidents. NPH can be caused by head injury, infection, surgery, or aging. NPH can sometimes be treated by draining the excess fluid from the brain through a tube called a shunt. This can improve the symptoms and quality of life for some people with NPH.
  9. Parkinson's dementia is a type of dementia that affects some people with Parkinson's disease. Parkinson's disease is a condition that affects the brain cells that produce a chemical called dopamine. Dopamine helps the brain control movement and coordination. People with Parkinson's disease have less dopamine and have problems with movement, such as tremors, stiffness, and slowness. Parkinson's dementia happens when the brain cells that control memory and thinking also get damaged. People with Parkinson's dementia may have problems with memory, attention, and planning. They may also have , delusions, and paranoia. Parkinson's dementia can happen at any stage of Parkinson's disease, but it is more likely to happen in the later stages. There is no cure for Parkinson's dementia, but some medicines and other treatments can help with the symptoms.
  10. Chronic traumatic encephalopathy (CTE) is a type of dementia that happens when the brain gets hurt many times. This can happen to people who play sports like football or boxing, or to people who are in the military or get hit in the head a lot. CTE damages the brain cells and makes them die. This makes the brain smaller and less connected. People with CTE have trouble remembering things, thinking clearly, and controlling their emotions. They may also act differently, get angry or sad easily, or see or hear things that are not there. CTE gets worse over time and there is no cure for it. But there are ways to help people with CTE live better.
  11. Creutzfeldt-Jakob disease (CJD) is a rare type of dementia that is caused by a bad protein in the brain called a prion. Prions are normally harmless, but when they change shape and clump together, they cause the brain cells to die. This affects the brain cells that control memory, thinking, and movement. People with CJD may have problems with confusion, vision, speech, and balance. They may also have muscle twitches, seizures, and hallucinations. CJD can happen for no reason, or it can be inherited, or it can be passed on by contact with infected tissue. CJD is profoundly serious and there is no cure for it. But there are medicines and other treatments that can help with the symptoms.
  12. Mixed dementia is when a person has more than one type of dementia at the same time. This means that their brain is affected by different diseases or conditions that damage the brain cells. For example, a person may have Alzheimer's disease and vascular dementia, or Alzheimer's disease and Lewy body dementia. Mixed dementia can make it harder for the person to remember things, think clearly, and do everyday tasks. They may also have other problems, depending on the types of dementia they have. For example, they may have trouble with movement, vision, or emotions. Mixed dementia can be hard to diagnose because the symptoms may overlap or change over time. Sometimes, the doctors may not know that a person has mixed dementia until they look at their brain after they die. However, some tests and scans can help doctors find out what types of dementia are part of the picture.

Table Summary of the Types of Dementia

Type of DementiaDescriptionStagesSigns and Symptoms
Alzheimer's diseaseA progressive brain disorder that damages and kills brain cells, causing memory loss and cognitive decline.Early: FAST 1-3, Middle: FAST 4-5, Late: FAST 6, Terminal: FAST 7Trouble remembering recent events, confusion, disorientation, mood and personality changes, difficulty speaking, writing, and swallowing.
Chronic traumatic encephalopathy (CTE)A brain disorder that occurs when the brain gets hurt many times, affecting the brain cells that control memory, thinking, and emotions.Early: Mild cognitive impairment, Middle: CTE, Late: Severe CTEProblems with memory, thinking, and controlling emotions, personality and behavior changes, anger, sadness, hallucinations.
Creutzfeldt-Jakob disease (CJD)A rare brain disorder that occurs when a bad protein in the brain called a prion causes the brain cells to die, affecting the brain cells that control memory, thinking, and movement.Early: Possible CJD, Middle: Probable CJD, Late: Definite CJDProblems with confusion, vision, speech, and balance, muscle twitches, seizures, and hallucinations.
Frontotemporal dementiaA brain disorder that occurs when the front and side parts of the brain are damaged, affecting the brain cells that control personality, behavior, and language.Early: Behavioral variant or primary progressive aphasia, Middle: Frontotemporal dementia, Late: Severe frontotemporal dementiaChanges in personality and behavior, loss of interest, impulsivity, problems with speaking, understanding, and writing.
Huntington's diseaseA genetic brain disorder that occurs when a faulty gene causes the brain cells to die, affecting the brain cells that control movement, thinking, and emotions.Early: Pre-manifest or prodromal, Middle: Early or middle stage, Late: Late or end stageInvoluntary movements, problems with memory, concentration, and judgment, mood and personality changes, depression, irritability, aggression.
Korsakoff dementiaA brain disorder that occurs when a lack of vitamin B1 causes the brain cells to die, affecting the brain cells that control memory and emotions.Early: Wernicke's encephalopathy, Middle: Korsakoff syndrome, Late: Chronic Korsakoff syndromeSevere memory loss, confabulation, problems with coordination and balance, eye movement abnormalities, low blood pressure, fast heart rate.
Lewy body dementiaA brain disorder that occurs when abnormal protein deposits called Lewy bodies build up in the brain, affecting the brain cells that control memory, thinking, and movement.Early: Mild cognitive impairment, Middle: Lewy body dementia, Late: Severe Lewy body dementiaProblems with attention, alertness, visual perception, hallucinations, Parkinson's symptoms, sleep disorders, fluctuations in cognition and behavior.
Limbic-predominant age-related TDP-43 encephalopathy (LATE)A brain disorder that occurs when a protein called TDP-43 builds up in the brain and damages the brain cells that control memory and emotions.Early: Mild cognitive impairment, Middle: LATE, Late: Severe LATEProblems with memory, especially recent memory, mood changes, depression, .
Mixed dementiaA condition where a person has more than one type of dementia, such as Alzheimer's disease and vascular dementia, or Alzheimer's disease and Lewy body dementia.Depends on the types of dementia involvedDepends on the types of dementia involved
Normal pressure hydrocephalus (NPH)A brain disorder that occurs when a buildup of fluid in the brain puts pressure on the brain, affecting the brain cells that control walking, thinking, and bladder control.Early: Possible NPH, Middle: Probable NPH, Late: Severe NPHProblems with walking, memory, concentration, and reasoning, urinary incontinence, apathy, mild dementia.
Parkinson's dementiaA brain disorder that occurs when the brain cells that produce dopamine die, affecting the brain cells that control movement, memory, and thinking.Early: Parkinson's disease, Middle: Parkinson's disease with mild cognitive impairment, Late: Parkinson's disease dementiaProblems with memory, attention, and planning, hallucinations, delusions, and paranoia, Parkinson's symptoms, depression, anxiety, sleep disorders.
Vascular dementiaA brain disorder that occurs when the blood vessels in the brain are damaged or blocked, reducing the blood flow to the brain and causing brain cell death.Early: Mild cognitive impairment, Middle: Vascular dementia, Late: Severe vascular dementiaProblems with thinking, planning, organizing, speaking, walking, and controlling emotions.

Trajectory of Illness

All progressive illnesses have a trajectory for how the loved one declines over time. Those with cancer tend to be highly functional until towards the end where they have a downward, predictable, slope. Those with heart and lung failure have a series of exacerbations along a steady decline before death.

Dementia tends to be like an odd roller coaster that just keeps going downhill with slight ups here and there as your loved one has less and less ability to function yet lingers.

Disease trajectory with Dementia being “Prolonged dwindling”

Families have shared their loved one's dementia started anywhere from ten to fifteen years ago; and just now coming onto hospice services and often after six months have passed share, they thought their loved one would be gone by now. Dementia is one of those progressive illnesses where one can be in the “terminal phase” of the illness (for dementia, FAST 7A and beyond — see the below) for months to years.

Taking a deeper look at prolonged dwindling

The Progression of Dementia

Dementia can be thought of as a journey that progresses in stages, and each person's experience is unique. Generally, it's categorized into three stages: early, middle, and late (Alzheimer's Disease is the only type of dementia that has seven stages with stages six and seven having substages).

  • Early Stage: This is when the signs are subtle and often mistaken for normal aging. Your loved one might misplace things or have trouble finding the right word. They're still independent, but these small changes can be the first clues that something is different.
  • Middle Stage: As dementia progresses to the middle stage, the signs become more apparent. Your loved one might get confused about the day or time, have mood swings, or start withdrawing from social activities. They'll need more help with daily tasks and might repeat questions or stories.
  • Late Stage: In the late stage, your loved one may need full-time assistance. They might have trouble walking, eating, or even recognizing their family. It's a time when compassionate care is crucial to ensure their comfort and dignity.

As a caregiver, understanding these stages helps you prepare for the changes ahead and provide t

Alzheimer’s Disease Staging

The — Functional Assessment Staging Tool — created by Dr. Barry Reisberg was designed to assess the stage of dementia of a person with Alzheimer's disease.

Fast Scale
Source: https://www.grepmed.com/images/631/stage-fast-hospice-score-assessment-72

While the FAST scale is specifically for Alzheimer's (it's the only dementia that follows the FAST scale to the letter in linear order — one stage before the other including the substates of 6 and 7) — it is also used for other dementias to provide a ballpark of where someone may be at. For Alzheimer's, always use the current stage the patient is at, for other dementia's I was taught to use the worst stage they are at if that stage is steady (not hit and miss).

The main caveat for all dementia comes to the inability to walk; if neurological (due to dementia), it's the stage (7C on up); if it is skeletomuscular (car accident, falls unrelated to dementia, etc.) then evaluate the person based on the highest level of function. Stages 1–3 are considered early, 4–5 middle, 6 late, and 7 the terminal stage. A person can be in any given stage (or substage) for any period without too much advance warning as to when they will move to the next stage.

None of the stages or substages by themselves tell you how much longer the person has to live. I still remember my FAST 7F Alzheimer's patient who was on hospice for close to two years (stick and bones also suffering from cachexia) and able to remain on hospice that long (terminal prognosis for hospice is around six months or less) due to frequent declines through each benefit period before dying.

I will now craft a new section to be added just below the “The Stages of Dementia” section in a compassionate and empathetic tone, suitable for families at a ninth-grade reading level.

Understanding the FAST Scale for Alzheimer’s

As you navigate the journey of caring for a loved one with Alzheimer's disease, understanding the stages of dementia can provide valuable insights into their condition and needs. The Functional Assessment Staging Tool (FAST Scale) is a helpful resource designed to assess the progression of Alzheimer's disease and guide caregivers in providing appropriate support.

How to Use the FAST Scale:

  1. Familiarize Yourself with the Seven Stages: The FAST Scale consists of seven stages, each representing different levels of functional decline. By familiarizing yourself with these stages, you can better understand the changes your loved one may experience.
  2. Observing Your Loved One: Take note of your loved one's abilities and behaviors to determine which stage of the FAST Scale they align with. Look for signs such as memory loss, difficulty with daily tasks, and changes in behavior.
  3. Matching Symptoms to Stages: Compare your loved one's symptoms and behaviors to the descriptions of each stage on the FAST Scale. This can help you identify where they currently stand in terms of their cognitive and functional abilities.
  4. Seeking Professional Guidance: If you are unsure about which stage your loved one is at or how to interpret their symptoms, don't hesitate to consult healthcare professionals or specialists experienced in dementia care. They can provide valuable insights and guidance tailored to your loved one's specific needs.

Applying the FAST Scale:

  1. Using the Current Stage: For individuals with Alzheimer's disease, it is essential to assess them based on their current abilities and behaviors rather than past stages. This approach ensures that their care plan aligns with their present needs.
  2. Understanding Progression: Remember that Alzheimer's disease is progressive, and individuals may transition through different stages of the FAST Scale over time. Stay observant and adapt your caregiving strategies accordingly as their condition evolves.
  3. Providing Compassionate Care: Above all, approach caregiving with empathy, patience, and understanding. Recognize that each individual's journey with Alzheimer's is unique, and your unwavering support can make a significant difference in their quality of life.

By familiarizing yourself with the FAST Scale and applying it thoughtfully to your loved one's care, you can enhance your ability to provide personalized support tailored to their evolving needs.

Example Application of the FAST Scale

You start off in stage 1, and then review what functionality is lost (it's not about memory per se, when it comes to Alzheimer's stages). You then review state 1 functions — yes/no…

Then stage 2, then stage 3… the moment you reach a stage where the person has function, you are the stage before it.

For example:

Stage 6C – Does not know how to use a toilet, BUT knows when they must urinate or have a bowel movement (i.e. they are continent of urine and bowel).

Stage 6D – Incontinent of bladder (includes accidents as well as they would have accidents if you did not make them go to the toilet)

Stage 6E – Incontinent of the bowel (same deal with accidents et al).

Let's state you are going through the list, and they meet Stage 6C but are continent of bowel and bladder. Then they are stage 6C.

If you read down the list and see 7C they cannot walk, and your loved one is fully continent of bowel and bladder, but cannot walk, they are still 6C and it's another issue than the disease as to why they cannot walk.

Common Presentations

A person with dementia can often present with either hyperactivity (anxiety, , combative behaviors) or hypoactivity (naps, sits, sleeps, minimal activity). For the former always review medications (see medication considerations below) as two commonly prescribed medications for dementia are not always discontinued when the patient is in the latter (stage 6) to terminal (stage 7) of dementia can cause and combative behaviors.

For those with anxiety and agitation consider discussing medical cannabis, CBD oil, tricyclic anti-depressants as well as having the provider assess for pain as undiagnosed pain can lead to increasing anxiety and agitation as well as paranoia. For those dealing with hypoactivity, consider discussing antidepressant medications as well as undiagnosed pain.

Both presentations involve uncontrollable memory loss at both the conscious and subconscious level. The inability to remember impacts the ability to make sound judgements, and the inability to remember also results in poor impulse control.

Medication Considerations

There are two medications commonly utilized to try to slow down the cognitive decline in patients with dementia: Donepezil (Aricept) and Memantine (Namenda). Sometimes patients are on both medications. They can work wonderfully if prescribed in stages 1 through 3, and in rare cases in the middle stages (4 and 5) yet starting in stage 6 on can create problems for the patient and family.

The dementia patient is incapable of connecting the dots; they are not able t comprehend why they cannot do something that looks easy or otherwise should be doable by them or cannot be done by anyone and they lack the capacity to understand the risks involved. Those two medications, in stages 6 and 7, may allow the patient to continue to appear more cognitively with it, but when they try to act on what they think they can do and fail, become frustrated, agitated, and anxious.

All patients with dementia have poor impulse control and lack of safety awareness and judgement, those medications can result in increased falls and risk for severe injury from those falls as they continue to try things, they believe they can do yet cannot do safely, if at all.

If your loved one is anywhere in stage 6 or later of dementia, please talk with your loved one's doctor asking them to discontinue both medications. You may also want to review the other medications your loved one is taking to determine risks vs. benefits as per the BEERS criteria; please don't presume your providers use the BEERS criteria or are aware of it.

One of the reasons polypharmacy is common among the elderly is due to the very fact most providers do not regularly review medications their patients are taking to determine if they still need to be taken, are causing more problems than what they are worth and so on.

One last medication to review, and this one controversial for many reasons is the drug category of statins which may help lower bad cholesterol (LDL) while potentially increasing good cholesterol (HDL). Statins include, but are not limited to atorvastatin, pravastatin, and simvastatin.

One of the side effects of statins is memory loss and confusion for which your loved one is already having and does not need it to move faster.

From the article titled, Cholesterol Drugs for People 75 and Older:

Statins have risks: “Compared to younger adults, older adults are more likely to suffer serious side effects from using statins. Statins can cause muscle problems, such as aches, pains, or weakness. Rarely, there can be a severe form of muscle breakdown.

In older adults, statins can also cause:

  • Falls
  • Memory loss and confusion
  • Nausea, constipation, or diarrhea.

Often, older adults take many drugs. These can interact with statins and lead to serious problems. Side effects, like muscle pain, may increase. Statins can also cause a fatal reaction when taken with heart-rhythm drugs.

Statins may increase the risk of type-2 diabetes and cataracts, as well as damage to the liver, kidneys, and nerves.”

At the one hospice agency where I worked, the medical director discontinued all statins for every patient including those on for heart failure as statin medications at the end of life have terrible side effects that can severely impact the comfort of those patients.

Communication Methods including validation of feelings

Naomi Feil is an acknowledged expert of using validation therapy as the best means of communicating with those who have dementia. Validation therapy focuses on encouragement and uplifting communication with your loved one that validates their feelings and avoids confrontation and correction.

When it comes to communicating effectively with those who have dementia — and for me validation therapy can be used for any type of communication — validation therapy is the only way to create win-win scenarios. If you focus on trying to educate, to correct their words, to correct their thought processes — i.e. fix them — you will end up in combative situations that can easily escalate into a nightmare.

Hospice Care for Your Loved One with Dementia

If you are caring for a loved one with dementia, you may have heard of hospice care, but you may not know what it is or when it is appropriate. Hospice care is a special type of care that focuses on providing comfort and support to people with life-limiting illnesses and their families. Hospice care does not aim to cure the disease, but to ease the symptoms and improve the quality of life in the final stages.

Hospice care can benefit people with dementia and their families in many ways. Hospice care can help manage pain, agitation, and distress that are common in advanced dementia. Hospice care can also provide emotional and spiritual support to the person with dementia and their loved ones, as well as practical assistance with daily tasks and caregiving. Hospice care can be provided at home, in a hospice facility, or in a nursing home, depending on the needs and preferences of the patient and the family.

Hospice care is available to people who have a life expectancy of six months or less, as determined by a physician. However, this does not mean that hospice care will end after six months. Hospice care can continue if the person meets the eligibility criteria, and the family wishes to receive it. For people with dementia, the eligibility criteria may include experiencing multiple physical and mental declines, such as losing weight, having difficulty swallowing, being bedridden, or having severe cognitive impairment. Hospice care may also be appropriate for people with dementia who require frequent nursing care or who have recurrent that are hard to treat or prevent.

Signs and Symptoms that Indicate Hospice Care May Be Appropriate for Someone with Dementia

Dementia is a progressive disease that affects the brain and causes memory loss, confusion, and behavioral changes. There are different types and stages of dementia, but one of the most common and severe forms is Alzheimer's disease. Alzheimer's disease can be measured by a tool called the FAST Scale, which stands for Functional Assessment Staging. The FAST Scale has seven stages, from 1 to 7, that describe the functional decline of people with Alzheimer's disease. Stage 7 is the most advanced stage, and it indicates that the person may benefit from hospice care.

Some of the signs and symptoms that are typical of stage 7 on the FAST Scale are:

  • Incontinence: The person is unable to control their bladder or bowel movements and needs diapers or pads.
  • Inability to communicate: The person cannot speak or understand language and may only make sounds or gestures.
  • Loss of all intelligible vocabulary: The person cannot say any words that make sense and may only repeat sounds or phrases.

Another sign that hospice care may be appropriate for someone with dementia is severe cognitive impairment. This means that the person has no awareness of self, environment, or time, and cannot recognize familiar people or objects. The person may not respond to their name, may not know where they are or what day it is, and may not remember their spouse, children, or friends. The person may also hallucinate, have delusions, or paranoia, and may become agitated or aggressive.

Other signs and symptoms that indicate hospice care may be appropriate for someone with dementia are recurrent and difficulty swallowing, eating, or drinking. Recurrent infections, such as pneumonia, urinary tract infections, or sepsis, are common in people with advanced dementia, and they can be life-threatening or cause complications. Difficulty swallowing, eating, or drinking can lead to weight loss, dehydration, or malnutrition, and can also increase the risk of choking or aspiration. These conditions can affect the person's comfort and well-being and may require hospice care to manage them.

Pain, agitation, or distress are also signs and symptoms that indicate hospice care may be appropriate for someone with dementia. Pain can be caused by various factors, such as infections, injuries, pressure ulcers, or arthritis, and it can be hard to detect or measure in people with dementia, who may not be able to express or report it. Agitation or distress can be caused by cognitive impairment, environmental factors, or unmet needs, and they can manifest as restlessness, anxiety, anger, or depression. Pain, agitation, or distress can affect the person's quality of life and comfort and may require hospice care to relieve them with medication or other interventions.

The Importance of Hospice Care for People with Dementia and Their Families

Hospice care can make a difference for people with dementia and their families in the final stages of the disease. Hospice care can help improve the person's comfort and dignity and reduce their suffering and stress. Hospice care can also help the family cope with the emotional and practical challenges of caring for a loved one with dementia and provide them with guidance and support. Hospice care can help the family prepare for the end of life and the grief process and offer them bereavement services after the death of their loved one.

If you think that hospice care may be right for your loved one with dementia, you should talk to your physician and hospice team about your options and preferences. They can help you determine the eligibility and availability of hospice care and explain the benefits and services that hospice care can provide. They can also help you find and select a hospice provider that meets your needs and expectations.

There are many resources and contact information that you can use to learn more about hospice care and find a hospice provider near you. Some of them are:

Hospice care can be a valuable option for your loved one with dementia and your family. Hospice care can help you make the most of the time you have left with your loved one and provide you with comfort and support. Hospice care can help you honor your loved one's wishes and values and celebrate their life and legacy. Hospice care can help you say goodbye to your loved one with peace and grace.

Conclusion

Dementia is a disease that affects the brain and causes memory loss and confusion. As the disease gets worse, the person with dementia may have trouble making decisions, controlling their impulses, and staying safe. A person with dementia may live for a long time with the disease, and this can be extremely hard for the family. The FAST scale is one of the ways to measure how far the disease has progressed, but it does not tell how much longer the person will live. The family should talk to the doctor about the medications and treatments that the person with dementia is taking and see if they can stop some of them that may cause more harm than good. The family should also use validation therapy, which is a way of talking to the person with dementia that makes them feel understood and respected.

Hospice care is another option that the family can consider for the person with dementia. Hospice care is a type of care that helps people who are extremely sick and near the end of their lives. Hospice care does not try to cure the disease, but to make the person comfortable and peaceful. Hospice care can also help the family cope with their feelings and challenges and give them support and guidance. Hospice care can be given at home, in a hospice facility, or in a nursing home, depending on what the person and the family want.

Hospice care is usually for people who have six months or less to live, as decided by the doctor. But this does not mean that hospice care will stop after six months. Hospice care can continue if the person needs it and the family wants it.

Some of the signs that show that hospice care may be right for the person with dementia are:

  • Stage 7 on the FAST scale, which means that the person cannot control their bladder or bowel, cannot talk, or understand, and cannot say any words that make sense.
  • Severe cognitive impairment, which means that the person does not know who they are, where they are, or what time it is, and does not recognize their family or friends.
  • Recurrent infections, such as pneumonia, urinary tract infections, or blood infections, which are hard to treat or prevent.
  • Difficulty swallowing, eating, or drinking, which can lead to weight loss, dehydration, or poor nutrition.
  • Pain, agitation, or distress, which can affect the person's comfort and well-being, and may not be helped by medication or other ways.

Hospice care can make a difference for the person with dementia and the family. Hospice care can help improve the person's comfort and dignity and reduce their suffering and stress. Hospice care can also help the family deal with the emotional and practical issues of caring for a loved one with dementia and prepare them for the end of life and the grief process. Hospice care can help the family honor the person's wishes and values and celebrate their life and legacy. Hospice care can help the family say goodbye to the person with peace and grace.

Resouces

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

As an Amazon Associate, I earn from qualifying purchases. The amount generated from these “qualifying purchases” helps to maintain this site.

Gone from My Sight: The Dying Experience

The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death

By Your Side , A Guide for Caring for the Dying at Home

SEVERE Dementia – 7 Ways to Boost Quality of Life (video)

Stages of Alzheimer's & Dementia: Durations & Scales Used to Measure Progression (GDS, FAST & CDR)

What Is Dementia?

MCI, Alzheimer's and Dementia. What's the Difference? – HOP ML Podcast (video)

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The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias

Dementia Home Care: How to Prepare Before, During, and After

The Dementia Caregiver's Survival Guide: An 11-Step Plan to Understand the Disease and How To Cope with Financial Challenges, Patient Aggression, and Depression Without Guilt, Overwhelm, or Burnout

Dementia Caregiving: A Self Help Book for Dementia Caregivers Offering Practical Coping Strategies and Support to Overcome Burnout, Increase Awareness, and Build Mental & Emotional Resilience

Navigating the Dementia Journey: A Compassionate Guide to Understanding, Supporting, and Living With Dementia

Ahead of Dementia: A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers

Four Common Mistakes by Caregivers of loved ones with Dementia and what do differently (video)

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

As an Amazon Associate, I earn from qualifying purchases. The amount generated from these “qualifying purchases” helps to maintain this site.

My Aging Parent Needs Help!: 7 Step Guide to Caregiving with No Regrets, More Compassion, and Going from Overwhelmed to Organized [Includes Tips for Caregiver Burnout]

Take Back Your Life: A Caregiver's Guide to Finding Freedom in the Midst of Overwhelm

The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself

Dear Caregiver, It's Your Life Too: 71 Self-Care Tips To Manage Stress, Avoid Burnout And Find Joy Again While Caring For A Loved One

Everything Happens for a Reason: And Other Lies I've Loved

The Art of Dying

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying

Understanding Hospice Care: Is it Too Early to Start Hospice?

What's the process of getting your loved one on hospice service?

Picking a hospice agency to provide hospice services

Medicare — Find and compare hospice providers

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