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How Long Does Late Stage Lewy Body Dementia Last

Stage : Moderately Severe Dementia

The Painful Truth About Lewy Body Dementia – A Personal Story

When the patient begins to forget the names of their children, spouse, or primary caregivers, they are most likely entering stage 6 of dementia and will need full time care. In the sixth stage, patients are generally unaware of their surroundings, cannot recall recent events, and have skewed memories of their personal past. Caregivers and loved ones should watch for:

  • Delusional behavior

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.

What Does Progression In Stages Mean

There are many different types of dementia and all of them are progressive. This means symptoms may be relatively mild at first but they get worse with time, usually over several years. These include problems with memory, thinking, problem-solving or language, and often changes in emotions, perception or behaviour.

As dementia progresses, a person will need more help and, at some point, will need a lot of support with daily living. However, dementia is different for everyone, so it will vary how soon this happens and the type of support needed.

It can be helpful to think of dementia progressing in three stages:

These are sometimes called mild, moderate and severe, because this describes how much the symptoms affect a person.

These stages can be used to understand how dementia is likely to change over time, and to help people prepare for the future. The stages also act as a guide to when certain treatments, such as medicines for Alzheimers disease, are likely to work best.

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Offer Touch And Human Contact

Sit with the person, hold their hand and talk to them as if they can still hear you. Hearing can be the last sense that a person loses at death. This shows that you care and shows respect. If family are at their loved ones bedside, stay with the person when the relative has a break, and again hold the persons hand.

The care team would need to plan how you can provide this kind of one-to-one support.

Stage Five: Moderately Severe Cognitive Decline

Lewy Body Dementia: The Cognitive Disorder You May Not ...

Stage five is marked by moderately severe cognitive decline. Individuals in this stage often have notable memory loss and begin to struggle with daily activities. Significant details such as address or phone number may be difficult to recall, and those with stage five dementia will likely need assistance with tasks such as meal preparation and bathing.

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How Can You Recognise When A Person Is Dying

Recognising when a person with advanced dementia is dying may not always be easy as they may have many general signs and symptoms of dying already. For example, some common signs and symptoms seen in people dying are:

  • profound weakness
  • needing assistance with all care
  • disorientation to time or place
  • agitated or restless
  • difficulty concentrating.

People with advanced dementia may show some of these signs and symptoms for months or even years making it hard to tell if the person is approaching death. However, if these symptoms become much worse over a period of two to three weeks, or even days or hours, it is important that a doctor or nurse sees the person. If the doctor or nurse thinks that the person is deteriorating or nearing the end of life and it would be in the persons best interest to be cared for in their own home, a care home or hospice then discuss this information with the persons family. They should also be given an explanation of why the deterioration is happening and the care that is going to be given. When death is expected it is usally not of benefit for the purpose with dementia to be sent to hospital: the death is more likely to be traumatic, unsupported and complicated by other medical events .

When the dying process is established, the person may experience further changes:

  • losing consciousness
  • no longer able to swallow
  • terminal restlessness
  • changes to breathing pattern and circulation .

Stage : Moderate Dementia

Patients in stage 5 need some assistance in order to carry out their daily lives. The main sign for stage 5 dementia is the inability to remember major details such as the name of a close family member or a home address. Patients may become disoriented about the time and place, have trouble making decisions, and forget basic information about themselves, such as a telephone number or address.

While moderate dementia can interfere with basic functioning, patients at this stage do not need assistance with basic functions such as using the bathroom or eating. Patients also still have the ability to remember their own names and generally the names of spouses and children.

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Some Hospice Providers Specialize In Dementia Care

While all hospices have the ability to provide care for someone with dementia, there are providers that actively specialize in this field. These hospices typically have tailored programs that are designed to support everyone involved in the life of a patient affected by this disease and help them cope with the unique challenges it brings.

Regardless of a programs specialty, Fields Lawler suggests that family caregivers ask the following questions of potential providers to help ensure their loved ones will receive the highest level of care:

  • Is your program certified by Medicare?
  • Is your staff experienced in providing care to patients with dementia-related illnesses?
  • Do you offer specialized services to improve a dementia patients comfort?
  • What services do you offer to the families, caregivers and friends of patients with dementia?
  • Fields Lawler also emphasizes the importance of finding a provider that is staffed with well-trained and loving hospice nurses and aidesthe unsung heroes of these end-of-life programs. These people will spend the most time with your loved one and help them complete the most intimate tasks like bathing, dressing and toileting. Many individuals with dementia have a fear of water, so having patient aides with a keen understanding of this disease is a must.

    Read:A Checklist for Finding the Right Hospice Program

    Medications At The End Of Life

    What to Expect with Late Stage Dementia Symptoms (My Experience)

    Many participants described stopping DLB medications near EOL. Occasionally this was associated with a decline:

    I would swear in a court of law that the galantamine worked for her And when I couldnt get her to take it is really when I started noticing the decline.

    Hospice commonly provided morphine for pain, breathing, or overall comfort. Many participants felt that morphine resulted in a peaceful death, but several participants described morphine as insufficient to address pain or causing paradoxical symptoms. Often hospice needed to supplement morphine with benzodiazepines. Multiple participants described using haloperidol from hospice comfort packs. In one case, this resulted in a severe reaction:

    He looked at the strings hanging down from the overhead lights and he thought they were a noose. I mean, it wasn’t anything you know, anything I was worried about. I was just relating to how things had been going. And she suggested Haldol. And I didn’t research it About two, two and a half hours since he had his Haldol He was suddenly sitting upright Every muscle in his body was clenched. His mouth was clenched. It was opening and closing, opening and closing. His tongue was thrusting out. He almost bit his tongue off at one point and he was groaning and moaning, and he was in terrible pain His temperature skyrocketed From there, his kidneys shut down, and he was gone by Tuesday morning.

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    How Important Are The Stages Of Dementia

    The stages of dementia are just a guide and there is nothing significant about the number three. Equally, dementia doesnt follow an exact or certain set of steps that happen in the same way for every person with dementia.

    It can be difficult to tell when a persons dementia has progressed from one stage to another because:

    • some symptoms may appear in a different order to the stages described in this factsheet, or not at all
    • the stages may overlap the person may need help with some aspects of everyday life but manage other tasks and activities on their own
    • some symptoms, particularly those linked to behaviours, may develop at one stage and then reduce or even disappear later on. Other symptoms, such as memory loss and problems with language and thinking, tend to stay and get worse with time.

    It is natural to ask which stage a person is at or what might happen next. But it is more important to focus on the person in the present moment. This includes their needs and how they can live well, and how to help them with this.

    For more support on living well with dementia see The dementia guide: living well after diagnosis or Caring for a person with dementia: a practical guide .

    And for more information about treatment and support for the different types of dementia go to the following pages:

    How Might Dementia Affect People Towards The End Of Life

    Dementia is progressive, which means it gets worse over time. In the last year of life, its likely to have a big impact on the persons abilities including memory, communication and everyday activities. The speed at which someone will get worse will depend on the type of dementia they have and who they are as an individual.

    The symptoms of later stage dementia include the following:

    A person with later stage dementia often deteriorates slowly over many months. They gradually become more frail, and will need more help with everyday activities such as eating, dressing, washing and using the toilet. People may experience weight loss, as swallowing and chewing become more difficult.

    A person with later-stage dementia may also have symptoms that suggest they are close to death, but continue to live with these symptoms for many months. This can make it difficult for the person and their family to plan for the end of life. It also makes it difficult for those supporting them professionally.

    For more information on supporting someone with later stage dementia see Alzheimers Society factsheet, The later stages of dementia .

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    What Does Best Practice Look Like Introducing The Priorities For Care Of The Dying Person

    There are five priorities:

    • Recognise: The possibility that a person may die within the next few days or hours is recognised and communicated clearly, decisions made and actions taken in accordance with the persons needs and wishes, and these are regularly reviewed and decisions revised accordingly. Always consider reversible causes, for example, infection, dehydration, hypercalcaemia.
    • Communicate: Sensitive communication takes place between staff and the dying person, and those identified as important to them.
    • Involve: The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.
    • Support: The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.
    • Plan & Do: An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion.

    Five Approximate Phases Of Lewy Body Dementia

    Overview of Dementia with Lewy Bodies (DLB) â CBD INC

    This post is about five phases of Lewy Body Dementia, according to a group of caregiver spouses.

    Some members of the LBD_caringspouses Yahoo!Groups list have been working on the LBD Approximate Phases for a year now. I just received from Sue Lewis this final version of the Phases. This caregivers view of the five phases of LBD is a worthwhile document, especially for those new to the world of LBD. Theyve been working on this list on and off for so long that, at this point, they are not inviting your suggestions on how to modify the document. But they welcome any general comments ! You can send comments to me and Ill pass them on .


    LBD APPROXIMATE PHASES AS SEEN BY CARING SPOUSESAugust 2007Facilitated by Sue Lewis of West Virginia, edited by June Christensen, Kansas


    ADL: Activities of Daily Living dressing/bathing/ feeding oneselfBP: Blood PressureDME: Durable Medical Equipmentwheel chair, shower chairDPOA: Durable Power of AttorneyLBD: Lewy Body Dementia

    • May accuse spouse of infidelity, aggression
    • Able to engage independently in leisure activities
    • Handwriting is affected
    • Impaired ability to handle financial responsibilities · Still may be able to work but driving skills often compromised


    • Ambulates/transfers without assistance but increased risk for falls/requires walker
    • Leaning to one side
    • Possible fainting
  • May be able to administer own medications
  • Able to follow content of most conversations
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    Stage Six: Severe Cognitive Decline

    Individuals in stage six need a high level of support to live comfortably. Memory loss tends to be significant, and many in stage six dementia are only able to recall memories of early life. Incontinence is common in this stage, and many patients also begin to lose their ability to speak. A change in personality may occur during this time period, which lasts an average of 2.5 years.

    Lewy Body Dementia Symptoms

    Symptoms of LBD can fluctuate but usually become progressively worse over time. Early in the disease, fluctuations between normal and abnormal behavior, mood, and cognitive ability can occur. The central feature of this disease is progressive dementia shown by deficits in attention and minor dysfunctions in the early stages that can progress to severe dementia.

    In severe dementia, the person’s inability to carry out normal daily functions, loss of recognition of family members, and other severe cognitive, behavior and mood problems can render the individual virtually helpless. Other features include fluctuating cognition, visual hallucinations, and spontaneous features of Parkinsonism such as body stiffness, tremors, shuffling gait, emotionless facial features and/or decreased coordination.

    As mentioned previously, the diagnosis is made on the basis of symptoms and their time of occurrence in patients. However, most doctors that make the diagnosis also typically use other tests primarily to rule out other causes for the symptoms.

    There are no sensitive or specific blood or urine tests that diagnose LBD. However, routine laboratory tests such as a basic metabolic panel, CBC, thyroid studies, vitamin B12 levels and tests for syphilis, Lyme disease, or HIV also may be ordered. MRI, CT scans, and other studies of the brain are used to help distinguish LBD from other problems that have similar symptoms.

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    End Of Life Signs In Lewy Body Dementia

    The symptoms of Lewy body dementia during the final days are disturbing for both the caregiver and the patient. This is the stage where patients are mostly bed ridden. Movement is slow and muscles are stiff. This results in contractures causing severe pain and discomfort. The loss of balance and impulsivity leads to frequent falls.

    Communication problems such as poor attention, voice changes, confusion and word finding problems are a great source of anxiety and agitation among the patients. Additionally, severe hallucinations that are often frightening make the life of the patient quite difficult. Severe psychosis can cause the patient to refuse to eat. Problems with swallowing are often noticeable at this stage, which have their own consequences. Patient sometimes forget to swallow and aspirate food into the lungs. This is one of the reasons of weight loss seen in end-stage disease. Patient may become anorexic resulting in the wasting and weakness of body muscles. Incontinence is another one of the most important features of end-stage and requires toileting.

    Long term care for Lewy body dementia is needed from here. The focus should be on making the environment as comfortable for the patient as possible. Some medications may also help. The patient needs lot of assistance and care to survive.

    Types of Lewy body dementia

    Lewy body dementia may present with two types of clinical syndrome:

  • Dementia with Lewy body
  • Parkinsons disease dementia
  • Stage Two: Very Mild Cognitive Decline

    Dementia LAST Stage Before Death ~ ABCs of Dementia FAQs: L

    Stage two may bring subtle changes in the individual, such as mild forgetfulness. These instances may include forgetting names or having trouble locating familiar objects. In the second stage of dementia, its difficult or impossible to notice these minor symptoms, and a diagnosis is not yet able to be reached.

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    Care In The Last Days Of Life With Dementia

    We use the words dying or terminal to describe when a person is in the last few days or hours of life. Sometimes a death is sudden and unexpected. More often, though, a person shows signs that they are dying: it is important to recognise these and plan ahead. This section will help you to anticipate and manage symptoms, as well as provide some tips to help prepare family and loved ones through what is a highly emotional and uncertain time.

    I dont want my mother to die alone. I want her to be comfortable and to die with dignity.

    A daughter of a person with dementia.

    Provide Physical Comfort And Care

    Assess the person to ensure they are not in discomfort or restless, and offer the kind of care described in the above section . Reduce any interventions to only what is necessary, for example change the persons position every few hours or when they need changing.

    Give regular mouth care. This can be done hourly to prevent the persons mouth from becoming dry. Apply Vaseline to keep lips moist.

    Give eye care, for example use a soft piece of wet clean gauze to prevent the persons eyes from looking sticky.

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