End-Stage Dementia: Care Options and What to Expect

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Dementia as a general condition is broken into seven stages, according to the Global Deterioration Scale for Dementia (GDS), a comprehensive tool used to assess patients’ emotional and physical symptoms. Stages 6 and 7 are the final stages of dementia. Stage 7 is the last before death, and here, the person with dementia experiences a rapid decline in most abilities.

Education, empathy, and attentiveness to end-stage dementia signs are crucial to compassionate dementia care. Learning how your loved one’s symptoms and needs may change in this last stage of dementia can help you prioritize their quality of life and navigate difficult care decisions, such as the introduction of palliative and hospice care.

What do emotional and behavioral symptoms look like in end-stage dementia?

A person in the last stage of dementia (stage 7) may show an increase in the following emotional and behavioral symptoms:

  • Depression or withdrawal
  • Difficulty communicating or inability to communicate
  • Anxiety
  • Wandering
  • Agitation and aggression
  • Hallucinations
  • Delusions
  • Changes in sleep patterns

What are the physical symptoms of the last stage of dementia?

Though every person’s body is different, physical late-stage dementia symptoms typically include:

  • Loss of speech
  • Loss of mobility
  • Difficulty swallowing (dysphagia)
  • Incontinence

As a loved one’s mobility declines, their risk for the following complications increases:

  • Systemic infections
  • Blood clots
  • Pressure ulcers (bed sores)
  • Falls

Caring for a loved one with advanced dementia

Because a person in the final stage of dementia may have trouble communicating, it’s important that caregivers pay close attention to signs of distress or pain so that palliative care can be introduced when the time is right. Palliative care is especially important if your loved one has not been diagnosed by a doctor as having a life expectancy of six months or less — a requirement to receive hospice care.

Signs of distress or pain in a non-verbal loved one can include:

  • Yelling, moaning, or shouting
  • Grimacing or crying
  • Restlessness with an inability to sleep

You may want to look into palliative care if your loved one consistently presents these symptoms.

Read: What Is Palliative Care and How Does It Differ From Hospice?

How long does end-stage dementia last?

For a senior with end-stage dementia, life expectancy is usually about six months to a year, but, again, that can depend on the person.

The presence of one or more of the signs above doesn’t necessarily indicate that death is imminent. It’s important to closely monitor your loved one’s overall quality of life and adjust their care plan in a timely manner.

Introducing palliative care earlier rather than later can help keep your loved one calm and comfortable during the end stage of dementia.


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Signs a loved one with advanced dementia is nearing the end of life

A person in the final stage of dementia requires constant care and supervision from a caregiver. Toward the end, the brain appears to lose more and more control over the body and the organs begin to shut down. End-of-life signs are typically the same for those with and without dementia:

  • Loss of mobility (bedridden)
  • Problems swallowing and breathing
  • Rattling in the chest
  • Frequent infections with fever
  • Decreased appetite and/or thirst
  • Chronic pain
  • Seizures
  • Increased sleep or loss of consciousness
  • Apathy

End-of-life care for late-stage dementia

Identifying when your loved one progresses to the final stage of dementia is critical for ensuring they receive compassionate end-of-life care. Because dementia affects people’s bodies so differently, and the difference between stages is more gray than clear-cut, your loved one may seemingly enter and then come out of the final stage of dementia. Getting better for a period of time and then declining again is often referred to as an end-of-life “rally.”

Because of this, your loved one’s doctor may be hesitant to give the diagnosis of six months left to live, which is required for a hospice care referral. If that is the case, then palliative care may be the best option for your loved one.

Palliative care

Palliative care focuses on alleviating a patient’s physical and emotional symptoms. It is meant to provide comfort, no matter the type, stage, or prognosis of one’s disease. Palliative care usually involves a holistic approach to care delivered by a team of specialists, such as:

  • Doctors, nurses, and certified nursing assistants
  • Physical, occupational, and speech therapists
  • Social workers
  • Bereavement counselors
  • Personal nutritionists
  • Chaplains or other spiritual leaders
  • Volunteers

Unlike hospice, palliative care still includes curative treatments for your loved one’s underlying illnesses. Even after the introduction of palliative care, it’s important to monitor your loved one for severe end-of-life signs so that hospice care can be introduced when needed. Because of their experience with terminally ill patients, many palliative care specialists can also help you identify when hospice is appropriate.

Hospice care

Hospice care is a type of palliative care that’s introduced when a patient’s doctor believes they have six months or less to live. This focused care involves the same type of specialists as palliative care, though it is completely centered on making your loved one as comfortable as possible during their final days.

Your loved one will no longer need to go through tests or screenings, and curative treatments will be discontinued. Families who use hospice care for their loved ones report a better end-of-life experience than families that do not use hospice care, according to the National Institute on Aging.

Like palliative care, hospice care can be provided across most settings, including hospitals, nursing homes, memory care facilities, assisted living facilities, and private homes. Starting hospice care when the time is right can not only help alleviate much pain for your loved one, but it can also provide your family with invaluable support and more stress-free time together during their final days.

Read: Hospice Care for Dementia: When Is It Time?

Next steps

If you need assistance caring for a loved one who’s nearing the end stage of dementia, consider hiring in-home care. A professional caregiver can help cover bases like bathing, incontinence care, and even housekeeping and cooking. This extra help can grant you more time to simply visit with your loved one and allow you to take a much-needed break from your caregiving duties.

Sources:
The Global Deterioration Scale for Assessment of Primary Degenerative Dementia (https://www.fhca.org/members/qi/clinadmin/global.pdf)
Measuring the suffering of end-stage dementia (https://pubmed.ncbi.nlm.nih.gov/14698490/)
Treatment of Sleep Disturbance in Alzheimer’s Dementia (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3961760/)
Caring for a Person With Late-Stage Alzheimer’s Disease (https://www.nia.nih.gov/health/caring-late-stage-alzheimers-disease)
Their last 6 months (https://academic.oup.com/ageing/article/35/6/597/14586?login=true)
End-of-Life Care for Dementia Patients (https://www.nia.nih.gov/health/end-life-care-people-dementia)

The information contained in this article is for informational purposes only and is not intended to constitute medical, legal, or financial advice or to create a professional relationship between AgingCare and the reader. Always seek the advice of your health care provider, attorney, or financial advisor with respect to any particular matter, and do not act or refrain from acting on the basis of anything you have read on this site. Links to third-party websites are only for the convenience of the reader; AgingCare does not endorse the contents of the third-party sites.

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