When To Seek Out Hospice Care For A Senior With Dementia
A great deal of uncertainty and misinformation surrounds hospice care and many families hesitate to discuss the option with physicians and their loved ones. Fields Lawler urges families to learn and talk about this valuable resource even if it isnt needed at the moment.
I am a big advocate for early hospice/palliative care intervention, she explains. I believe that if a family caregiver is thinking their loved one needs help, has questions, and needs guidance, then that is the time to seek out assistance. It is never too early to begin gathering information and forming a plan as a family. Hospice exists to support patients as well as their family members throughout this trying time.
Because those with dementia decline so gradually, family members may not seek help until their loved ones are very close to the end. Many do not realize that assistance and specialized care may have been available much earlier. While a physician must make the official determination of life expectancy, Fields Lawler recommends requesting a hospice evaluation if an individual with dementia exhibits the following signs:
- Constant, elevated levels of anxiety and stress
- Complete dependence on others for assistance with activities of daily living , such as eating, bathing, grooming and toileting
- Extreme difficulty or complete inability to walk without assistance and
- The ability to only speak a few intelligible words and phrases.
Prognosis For Lewy Body Dementia
Unfortunately, there is currently no cure for Lewy Body Dementia. The average life expectancy for people with LBD after the onset of symptoms is 5 to 8 years. However, individuals with Lewy Body Dementia have lived anywhere between 2 and 20 years depending on their age, the severity of their symptoms, and their other medical conditions.
The course of Lewy Body Dementia can vary across people, but is usually progressive but vacillating. In other words, across time, people decline, but there may be periods of return to a higher functioning level. This decline may be exacerbated by medications and/or infections/diseases.
What Is Lewy Body Dementia Causes Symptoms And Treatments
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Lewy body dementia is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood. Lewy body dementia is one of the most common causes of dementia.
LBD affects more than 1 million individuals in the United States. People typically show symptoms at age 50 or older, although sometimes younger people have LBD. LBD appears to affect slightly more men than women.
Diagnosing LBD can be challenging. Early LBD symptoms are often confused with similar symptoms found in other brain diseases or in psychiatric disorders. Lewy body dementia can occur alone or along with other brain disorders.
It is a progressive disease, meaning symptoms start slowly and worsen over time. The disease lasts an average of five to eight years from the time of diagnosis to death, but can range from two to 20 years for some people. How quickly symptoms develop and change varies greatly from person to person, depending on overall health, age, and severity of symptoms.
In the early stages of LBD, symptoms can be mild, and people can function fairly normally. As the disease advances, people with LBD require more help due to a decline in thinking and movement abilities. In the later stages of the disease, they often depend entirely on others for assistance and care.
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Life Expectancy And Dementia With Lewy Bodies
Dementia with Lewy bodies accounts for around 7% of cases of dementia. Lewy bodies are tiny protein deposits that affect thought, memory and movement and are linked to both dementia and Parkinsons disease.
Hallucinations, sleep disturbance, and movement problems can be an early feature in dementia with Lewy bodies, so that diagnosis may be made at an earlier stage. Some research suggests that survival can be significantly shorter with this challenging condition, however, the Alzheimer’s Society says:
Towards The End Of Life
It can be very difficult for family and carers to prepare for the end, but by thinking about it and making some plans, it may be a little easier. When someone reaches the final stages of life one of the main concerns is to ensure that they are comfortable and as pain free as possible. If you are concerned that the person with dementia may be in some pain or discomfort, discuss this with the doctor and nursing staff.
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The Start Of The Dying Process
As someones condition worsens and they get to within a few days or hours of dying, further changes are common. The person will often:
- deteriorate more quickly than before
- lose consciousness
- develop an irregular breathing pattern
- have cold hands and feet.
These changes are part of the dying process. Healthcare professionals can explain these changes so you understand what is happening. The person is often unaware of what is happening, and they should not be in pain or distress.
Medication can be used to treat the persons symptoms. If the person cant swallow, there are other ways of providing this, such as medication patches on the skin, small injections or syringe drivers . Speak to a GP or another health professional about this.
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Physical Difficulties In The Later Stages Of Dementia
The physical changes of late-stage dementia are partly why the person is likely to need much more support with daily living. At this stage they may:
- walk more slowly, with a shuffle and less steadily eventually they may spend more time in a chair or in bed
- be at increased risk of falls
- need a lot of help with eating and so lose weight
- have difficulty swallowing
- be incontinent losing control of their bladder and bowels.
The persons reduced mobility, in particular, raises their chances of blood clots and infections. These can be very serious or even fatal so it is vital that the person is supported to be as mobile as they can.
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Can You Die From Dementia
Dementia is usually considered a disorder affecting memory and is associated with aging. In the initial stages, this could be true. Loss of memory is one of the earliest signs of the disease.
However, according to experts, dementia is a fatal brain failure that needs to be taken seriously like other terminal diseases that kill a patient slowly. It is not just an ailment that is associated with the elderly.
Even though the distinction is not really known in the medical field and to the general public, it is something that needs to be considered when one has to be treated at the very end stage of the condition.
It is believed that the fact that people are misinformed and misguided about dementia, the end stage treatment is usually made very aggressive.
The disease progresses quite slowly and the fact that it affects so many people means that it should be taken seriously. Dementia is a collection or a consequence of different diseases like Alzheimers disease, vascular dementia, and Parkinsons disease. In later stages, you can tell the type of dementia that is affecting a certain patient.
The patient can have eating problems, pneumonia, fever, pain, and difficulty breathing, which are all caused by the failure of the brain. In the end, dementia involves so many other parts of the body.
It is important to appreciate that the brain is the engine of our bodies. It controls everything, including metabolism, gastrointestinal tract, the lungs, and even the heart.
Lewy Body Dementia Stages And Progression
It is important for individuals to know Lewy body dementia stages, especially if you or a loved one is affected by the condition.
This helps you to understand what to expect so that you can tackle it head-on without any unwelcome surprises.
Before we go deep into the stages, lets get an overview of what Lewy body dementia is and its progression.
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Getting Prepared For A Death
Care staff need to know the persons wishes for their death: where they would prefer to be when they die, who should be present, how pain might be treated, and so on. A persons spiritual and cultural needs are important throughout their life, but may take on a particular significance at the end of their life. We can only support a person nearing death properly if we know this information and have recorded it accurately so they have the best possible, and personalised, end-of-life care
Ensuring that a person is as physically comfortable as possible when they are dying also takes preparation. Is a hospital-style bed available, for example, if it is needed? Is a suitable mattress to hand? How can dignity best be maintained if all personal care is provided at a persons bedside? Does the persons room need to be altered in any way, for example fitting new lighting?
Relatives also need to be prepared. For family, having a good relationship with care staff may be a critical part of the lead-in to this dying phase. You also need to know family members wishes at this time. For example, do they want to be present for the death if possible?
How To Test For Dementia
There is no single test that can determine a person is suffering from dementia. The doctor can diagnose different types of dementia such as Alzheimers based on their medical history.
This has to be done very carefully. In addition, the doctor may conduct laboratory tests, physical examinations, and changes in the way the patient thinks.
When all things are considered carefully, a doctor can be able to determine that a person is actually suffering from dementia with certainty. Determining the type of dementia can be hard, especially due to the fact that brain changes and symptoms that are associated with the different types of dementias sometimes overlap.
It is normal for the doctor to give a diagnosis of dementia without really specifying the type. In such a case, it is important for the patient to visit a specialist in this area like a psychologist or neurologist for a more specific diagnosis.
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Dementia Stages: How Fast Dementia Progresses Stages Of Dementia And More
Dementia is a progressive impairment of cognitive function caused by damage to the brain. Over time, a person with dementia will have increased difficulty with memory, understanding, communication, and reasoning.
Healthcare providers frequently speak about a persons dementia in terms of stages. This can be helpful for communicating with family or other healthcare providers regarding the persons illness, and it is important for determining an appropriate care plan.
How Fast Does Dementia Progress?
It is important to note that dementia progresses at different speeds for every person, and for different types of dementia. The most well-known form of dementia, Alzheimers disease, is just one specific type of dementia, and tends to have the slowest progression of all types. Some factors that affect the rate of progression include:
- Age
- Repeated infections
What are the Stages of Dementia?
There are a few different systems used to grade dementia — at the most basic there is early, moderate, and end. Many providers use the system developed by Dr. Barry Reisberg of New York University which includes 7 stages. The Reisberg scale is also known as the GDS or Global Deterioration Scale for Assessment of Primary Degenerative Dementia. This scale focuses primarily on cognitive abilities.
Dementia Stages in the Reisberg Scale
Dementia Stages in the FAST Scale
Dementia Stages in the CDR Scale
When Should I Ask For Support
Supporting people with dementia at the end of their life requires a team approach. Often, there will be many people involved in the persons care at the end of their life. Good communication and information sharing helps to ensure the person receives the care they need.
If youre unsure about anything or have any concerns seek advice from a colleague, manager or another health care professional.
There may be certain professionals who can advise on specific issues. These may include a GP, district nurses, social workers, other care staff and specialists.
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Lewy Body Dementia Prognosis
Lewy body dementia is a form of dementia characterized by the development of abnormal deposits in the brain. People with Lewy body dementia have trouble with movement as well as cognitive decline. Thinking problems generally show up before movement problems. As progresses, affected individuals may also experience visual and sleep problems.
Life expectancy for a person with Lewy body dementia is approximately 2 to 8 years after the onset of noticeable symptoms.
How Fluid Deprivation Affects The Terminally Ill
The absence of hydration is a normal part of the dying process and allows a more comfortable death over a period of days. The use of IV hydration can prolong dying for weeks and physically burdens the person. While intravenous hydration may temporarily provide fluid, it cannot maintain nutritional requirements. Increased hydration may also decrease the person’s comfort because hydration promotes excessive respiratory secretions, resulting in breathing difficulties. In one study 8 out of 10 hospice nurses agreed that dehydration is not painful, and more than half of them said that it’s beneficial. Printz reported that terminally ill patients in end-stage dehydration experienced less discomfort than did patients receiving medical hydration. One explanation for this is that dehydration causes the production of ketones, which have an anesthetic effect.
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Alma And Silvias Story
Alma had been forgetful for years, but even after her family knew that Alzheimers disease was the cause of her forgetfulness, they never talked about what the future would bring. As time passed and the disease eroded Almas memory and ability to think and speak, she became less and less able to share her concerns and wishes with those close to her.
This made it hard for her daughter Silvia to know what Alma needed or wanted. When the doctors asked about feeding tubes or antibiotics to treat pneumonia, Silvia didnt know how to best reflect her mothers wishes. Her decisions had to be based on what she knew about her moms values, rather than on what Alma actually said she wanted.
Quality of life is an important issue when making healthcare decisions for people with dementia. For example, medicines are available that may delay or keep symptoms from becoming worse for a little while. Medicines also may help control some behavioral symptoms in people with mild-to-moderate Alzheimers disease.
However, some caregivers might not want drugs prescribed for people in the later stages of Alzheimers. They may believe that the persons quality of life is already so poor that the medicine is unlikely to make a difference. If the drug has serious side effects, they may be even more likely to decide against it.
What Are The Symptoms
Each person is unique and will experience dementia in their own way. The different types of dementia tend to affect people differently, especially in the early stages.
A person with dementia will often have cognitive symptoms . They will often have problems with some of the following:
- Day-to-day memory difficulty recalling events that happened recently.
- Repetition repeating the same question or conversation frequently in a short space of time.
- Concentrating, planning or organising difficulties making decisions, solving problems or carrying out a sequence of tasks .
- Language difficulties following a conversation or finding the right word for something.
- Visuospatial skills – problems judging distances and seeing objects in three dimensions.
- Orientation – losing track of the day or date, or becoming confused about where they are.
Some people have other symptoms including movement problems, hallucinations or behaviour changes.
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Distribute Advance Directive Documents
Give copies of the documents to family members, physicians and other heath care providers. Have advance directives placed in the medical records of the person with AD. If he or she is transferred to a different care setting, such as a residential care facility or hospital make sure the staff has copies as well.
Is Artificial Nutrition And Hydration A Good Idea
Most health professionals now feel that a person with advanced dementia and in the end stage of their illness should not be fed by tubes or drips. This is because inserting tubes or IV drips requires hospital admission, which can be very distressing for the person. They may then pull out the tubes and drips, and the site of the tubes and drips can become infected and sore.
He was very distressed in hospital and kept pulling out his tubes he didnt understand what was happening to him and they didnt know how to help him.
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How Can Delirium Be Treated For A Person At End Of Life
Delirium can be distressing to the person and those around them. It is treated in different ways depending on the causes and the persons needs.
If delirium is being caused by something the medical team cannot treat, they may suggest reducing the persons distress using drugs that help them to stay calm and reduce their distress. These medications can help to give them a sense of peace at the end of their life.
Eating And Drinking At The End Of Life
People with dementia can develop problems with eating, drinking and their ability to swallow at any stage of their illness, although it is most common to see this at the more advanced stages. In this section you’ll be able to explore why this happens and how you can help.
When a person with advanced dementia takes in only a very limited amount of food and fluids or can no longer swallow safely, it can be an extremely difficult and emotional time for family and care staff as they try to work out how to best respond and care for the person with dementia. It is important to try and maintain eating and drinking, even in very small amounts, for comfort and enjoyment. Speech and language therapists can help and advise about swallowing changes at this time.
What happens when Pete can no longer swallow? Will he just starve to death? I dont want him suffering.
A woman speaking about her husband who has dementia.
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