How Hospice Can Help With End
In addition to helping you in recognizing the signs of dying in the elderly with dementia, bringing in hospice care will help with the physical and emotional demands of caregiving. Nurses will be able to adjust medication and care plans as the individuals needs change. Aides can help with bathing, grooming, and other personal care. Social workers can help organize resources for the patient and family. Chaplains and bereavement specials can help the family with any emotional or spiritual needs. Additionally, family members can contact hospice at any time, and do not need to wait until it is recommended by the patient’s physician.
To learn more about the criteria for hospice eligibility or to schedule a consultation, please contact Crossroads using the blue Help Center bar on this page for more information on how we can help provide support to individuals with dementia and their families.
Life Expectancy By Stage Of The Disease
The average number of years a person lives with Alzheimers disease is about 10. Keep in mind, however, that theres a gap between when symptoms begin and when a diagnosis is actually sought. The first symptoms of Alzheimers diseaseforgetting names, misplacing items, difficulty concentrating at work or performing simple tasksarrive an average of almost three years before the diagnosis is made.
The scale most commonly used by health professionals for the stages of dementia is the Global Deterioration Scale , also called the Reisberg Scale. The table below shows a patients average life expectancy by the stage of dementia. These are averages based on studies of large numbers of Alzheimers patients.
|Life Expectancy By Stage of Alzheimers / Dementia|
|Stage 7: Very Severe Cognitive Decline||1.5 to 2.5 years||2.5 years or less|
What You Can Do For Your Loved One
As an individual with dementia declines, you can help them by providing a loving and supportive presence. Sit with them. Hold their hand. Play music they enjoy.
One of the greatest gifts you can give your loved one is helping to get their affairs in order. Ensure that financial and healthcare powers of attorney are put in place, so you can make decisions when your loved one is no longer able. Look into funeral arrangements before you need them, so you dont need to make important decisions in a time of crisis.
Talk to your loved ones physician about the possibility of palliative care support in the home and hospice care when your loved one is ready.
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Stage : Moderately Severe Decline
Your loved one might start to lose track of where they are and what time it is. They might have trouble remembering their address, phone number, or where they went to school. They could get confused about what kind of clothes to wear for the day or season.
You can help by laying out their clothing in the morning. It can help them dress by themselves and keep a sense of independence.
If they repeat the same question, answer with an even, reassuring voice. They might be asking the question less to get an answer and more to just know you’re there.
Even if your loved one can’t remember facts and details, they might still be able to tell a story. Invite them to use their imagination at those times.
End Of Life Care Through Your Loved Ones Dying Process
Hospice care allows you to share your loved ones most difficult journey with them, which can make it easier for you and them to obtain closure. Providing a high quality of life should be your main focus, which may be easier early on when you can still participate in a range of activities together. To properly care for them later in the dying process, make sure they are hydrated and fed without forcing anything on them. It will be normal for your loved one to become somewhat dehydrated during their final days. You may also have to clean them and move them to avoid bedsores.
Maintaining good communication with your loved one can help you provide them with the best possible support during their last days. In doing so, you may find that you both may want to spend time alone. This can help both of you cope with the dying process and allow you to better appreciate the time you have together. Your loved one can also let you know of any medical care they wish to receive or refuse should they become unresponsive.
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Being Your Loved Ones Prosthetic Memory
A person-centered approach emphasizes a patients strength, resiliency and functionality rather than their deficits, or the state of their disease. This is something that caregivers and especially loved ones and family members can take into their own hands.
Knowing who that person is, and weaving that into everything you do how can that allow the person to function more because youre focusing on strengths rather than deficits, Fazio said.
One way to do that is to be a prosthetic memory for your loved one, Fazio said. Sharing old photographs, music, favorite foods or reading books they enjoyed could help you connect with people in ways other than verbally.
Its about realizing that just because the person cant communicate memories, it doesnt mean they dont know their memories, Fazio said. We dont really know whats going on in the brain. Lets assume they know everything, but theyve lost the ability to initiate that to us.
Learn more about end stage Alzheimers and the features of a person-centered approach here.
How Dementia Causes Death
A person in the late stage of dementia is at risk for many medical complications. Because they’re unable to move, they’re especially high risk for certain conditions.
In the end, most people with late-stage dementia die from underlying dementia or a related complication. For example:
- A person may die from an infection like aspiration pneumonia. If someone has trouble swallowing, food or liquids may go down the wrong tube. Instead of going into the esophagus or stomach, it’s breathed into the airways or lungs. This leads to a type of pneumonia called aspiration pneumonia.
- Another person may die from a blood clot in the lung because they are bedbound and not mobile.
It’s important to know that late-stage dementia is a terminal illness and can lead to death. In these cases, the death certificate may list dementia as the cause of death.
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Support For Dementia Caregivers At The End Of Life
Caring for people with Alzheimers or other dementias at home can be demanding and stressful for the family caregiver. Depression is a problem for some family caregivers, as is fatigue, because many feel they are always on call. Family caregivers may have to cut back on work hours or leave work altogether because of their caregiving responsibilities.
Many family members taking care of a person with advanced dementia at home feel relief when death happensfor themselves and for the person who died. It is important to realize such feelings are normal. Hospicewhether used at home or in a facility gives family caregivers needed support near the end of life, as well as help with their grief, both before and after their family member dies.
End Of Life Dementia Care And Covid
Older adults and people with serious underlying medical conditions are at higher risk for severe illness from COVID-19. Older adults also have the highest rates of dementia. Given the risks that older adults face from both COVID-19 and dementia, its important to understand how to protect yourself and your loved one. Find more information about dementia and COVID-19 from the CDC.
When a dementia like Alzheimers disease is first diagnosed, if everyone understands that there is no cure, then plans for the end of life can be made before thinking and speaking abilities fail and the person with Alzheimers can no longer legally complete documents like advance directives.
End-of-life care decisions are more complicated for caregivers if the dying person has not expressed the kind of care he or she would prefer. Someone newly diagnosed with Alzheimers disease might not be able to imagine the later stages of the disease.
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Changes In Mood And Emotions
Having a brain disease that changes your perception of the world around you often causes dramatic changes in mood and emotion.
Everyone is different, and everyone exhibits different symptoms, meaning there is no definitive list of what to expect however, were here to offer guidance about some of the most common end-stage dementia symptoms.
Patients who are experiencing dementia’s last stage symptoms may experience:
Anger and frustration
Mood disorders such as depression and anxiety
Self-awareness that their faculties are lessening
If you think you are experiencing any signs of dementia and live alone, now would be the time to discuss moving in with a loved one or into an assisted living facility that best suits your needs.
If you are reading this and have a loved one who is already in an assisted living facility, transitioning from assisted living to memory care may be the option that works best for all.
How To Ensure The Person Eats Well
In the later stages of Alzheimers disease, many people lose interest in food and caregivers may notice changes in how or when they eat. They may not be aware of mealtimes, know when they’ve had enough food, or remember to cook. If they are not eating enough different kinds of foods, they may not be getting the nutrients they need to stay healthy.
Here are some suggestions to help a person with late-stage Alzheimer’s eat better. Remember that these are just tipstry different things and see what works best for the person:
- Serve bigger portions at breakfast because it’s the first meal of the day.
- Offer several smaller meals throughout the day.
- Serve meals at the same time each day.
- Make the eating area quiet. Turn off the TV or radio.
- Control between-meal snacks. Lock the refrigerator door and food cabinets if necessary.
- If the person has dentures, make sure they fit. Loose dentures or dentures with bumps or cracks may cause choking or pain, making it harder to eat. Remove poorly fitting dentures until the person can get some that fit.
- Let the person’s doctor know if they lose a lot of weight, for example, if he or she loses 10 pounds in a month.
You can also try different ways of preparing the person’s plate. For example:
If the person needs help eating, you might try to:
When choosing foods to eat and liquids to drink, these suggestions might help:
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What To Do Next After Learning What Stage Of Alzheimer’s Disease Your Loved One Is In
As mentioned, learning about the stage of Alzheimers disease that a loved one is experiencing helps provide perspective and context. This knowledge makes it easier to have conversations with doctors about the patients condition and how to approach future treatment options. Understanding the later stages of the disease also helps when planning for lifestyle changes, new equipment, and other items that may be needed. One of the other major benefits in understanding the overall progression of Alzheimers disease is preparing for future living arrangements, such a memory care community, that could become a preferred option during later stages of the disease. Because the cost of dementia care is high, families should begin planning as soon as possible following a diagnosis.
Duration Of Stages: How Long Do The Stage Of Alzheimers / Dementia Last
No two people with dementia experience the disease exactly the same way, and the rate of progression will vary by person and type of dementia. In addition, it is not uncommon for individuals to have mixed dementia, meaning they have more than one type. That said, there is a natural course of the disease, and over time the capabilities of all persons with dementia will worsen. Eventually, the ability to function goes away. Keep in mind that changes in the brain from dementia begin years before diagnosis, when there are no outward symptoms. This makes it difficult to know how much time a person has left, though there are ways to come close to knowing life expectancy.
|Life Expectancy by Dementia Type|
|2 to 8 years following pronounced symptoms|
Mild DementiaIn this early stage of dementia, an individual can function rather independently, and often is still able to drive and maintain a social life. Symptoms may be attributed to the normal process of aging. There might be slight lapses in memory, such as misplacing eyeglasses or having difficulty finding the right word. Other difficulties may include issues with planning, organizing, concentrating on tasks, or accomplishing tasks at work. This early stage of dementia, on average, lasts between 2 and 4 years.
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How Does Dementia Reduce Life Expectancy
Dementia reduces life expectancy in two ways.
First, some of the diseases that are closely linked to Alzheimers disease and vascular dementia, such as diabetes and cardiovascular disease can mean a lower life expectancy. For example, vascular dementia is closely linked to heart disease and stroke. A person with vascular dementia is at risk of dying at any stage of dementia, from one of these.
The other way that dementia reduces life expectancy is through the effects of severe disease.
These all make them much more likely to develop other medical problems that can lead to death, such as infections or cardiovascular problems .
This is why the later stage of dementia is often the shortest.
A person with dementia can also die at any stage from another condition not closely related to their dementia. Cancer and lung disease are common examples.
Does The Type Of Dementia Affect Life Expectancy
The type of dementia a person has can also affect how long they live with dementia. These figures for the number of years a person may live after a diagnosis are just averages and some people live longer than this.
This information may be upsetting to read and think about but it is very important to remember that, with the right support, people with dementia can live well at all stages.
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Dementia End Of Life: When To Call For Professional Care
It is usual to take care of a family member in their early and especially last stages of dementia. But it is still better to get help from professionals. This relieves the patients primary caregiver from responsibilities and prepares the family for what to expect of the disease.
Hospice care provides patients with the most comfortable safekeeping until their last days because of dementia. Additionally, it offers their loved ones the support they need through doctors, nurses, social workers, counselors, and other trained professionals.
Getting dementia patients hospice services doesnt mean you are giving them up. Instead, it means youre thinking of their well-being by giving them the care, comfort, and support you both need.
Its hard to see them suffering from the signs of dementia without knowing what to do. Hospice focuses on providing your loved ones the appropriate care they need to deal with the disease as easily as possible.
Changes In Mood Emotions And Perceptions
Changes in mood remain in the later stages of dementia. Depression and apathy are particularly common.
Delusions and hallucinations are most common in the late stage of dementia. They are not always distressing but they can explain some changes in behaviour because the persons perception of reality is altered.
People with later stage dementia often respond more to senses than words. They may like listening to songs or enjoy textures. For example, they may like the feel of different types of material.
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Late Stages Of Alzheimers Disease Symptoms
The needs of the person with Alzheimers become much more demanding as the disease progresses. In the late stages of Alzheimers, the person with the disease loses the ability to respond appropriately and is unable to converse with others. They will also develop an inability to control movements like sitting, standing and walking.
Here are some other common symptoms of the disease that can occur:
- Catches colds and infections easily
- Day/night reversal of sleep pattern
- Difficulty communicating
- Difficulty using the toilet independently
- Eventually requires help with activities of daily living, 24 hours per day
- Eventually unable to walk
- Hoarding, rummaging
- Inability to sit and eventually to swallow
- Loss of awareness of surroundings
- Needs help walking
- Needs progressively more help with personal care
- Personality changes such as aggression, anxiety, hostility, irritability or uncooperativeness
- Repetitive questioning
- Verbally aggressive or demanding behavior
Mild Impairment Or Decline
The symptoms of Alzheimers are less clear during stage 3. While the entire stage lasts about 7 years, the symptoms will slowly become clearer over a period of 2 to 4 years. Only people close to someone in this stage may notice the signs. Work quality will decline, and they may have trouble learning new skills.
Other examples of stage 3 signs include:
- getting lost even when traveling a familiar route
- finding it hard to remember the right words or names
- being unable to remember what you just read
- not remembering new names or people
- misplacing or losing a valuable object
Your doctor or clinician may also have to conduct a more intense interview than usual to discover cases of memory loss.
Caregiver support: At this stage, someone with Alzheimers may need counseling, especially if they have complex job responsibilities. They may experience mild to moderate anxiety and denial.
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