When music legend Glen Campbell developed dementia, his wife Kim became his 24-hour caregiver. But after several years, Kim realized she needed more help. Glen was slipping into the final stages of Alzheimer’s disease, the most common form of dementia and the 6th leading cause of death in the United States.
Glen had become increasingly confused, anxious, and combative. Kim could no longer bathe her husband of 34 years without a fight, and she worried he’d leave the house in the middle of the night.
People with dementia “can become paranoid, suspicious, violent,” she said in a recent interview in The Tennessean. “They just lose their ability to think or reason… You [the caregiver] can’t do it all by yourself.”
It has been five years since Glen was diagnosed; now it was time for him to move into a facility with 24-hour supervision, as they had planned years earlier.
The early years, filled with increasing memory lapses, are a constant reminder that it’s important to plan for the future. Patients and families must prepare for the more challenging symptoms of end-stage dementia – and the intense level of care required.
During the early stages, your loved one may still drive, take part in social activities, volunteer, and even work. As a caregiver, this is your opportunity to talk about the future, including legal, financial, and long-term care planning. As every patient is different, and it’s difficult to accurately, predict how long end-stage dementia will last, planning ahead can help alleviate potential issues down the road.
Radio personality Casey Kasem was diagnosed in 2007 with Lewy Body dementia, the most misdiagnosed form of dementia. It’s similar to Alzheimer’s disease but with additional symptoms of hallucinations, severe sleep disruptions, fluctuating alertness and problems with movement. 
Casey’s end-of-life care, like Glen Campbell’s, made headlines for different reasons. As Casey lived out his final days, the family feuded over the best care options for him. Casey’s children said they were complying with their father’s wishes to die comfortably and peacefully surrounded by family and friends, while his wife claimed they were ceding care and prematurely ending Casey’s life.
Making healthcare decisions early and putting them in writing is essential. It will help avoid confusion about your loved one’s wishes. Knowing these wishes will also bring you peace of mind and the ability to make the best decisions regarding care.
As this heart-breaking disease progresses, your loved one will have a difficult time expressing thoughts and performing tasks. According to Alz.org, you may notice your loved one jumbling words, having trouble dressing, getting frustrated or angry, or acting in unexpected ways, such as refusing to bathe.
In an excerpt from Samaritan’s recent blog article, The Role of a Hospice Nurse, Rosemary cares for her husband Bob who is living with Alzheimer’s disease. She confides in Bob’s hospice nurse, who writes,
“Rosemary tells me Bob has been getting increasingly more agitated when he has a bath from the home health aide. She says the aide is so patient and gentle, but she’s worried she’ll be upset by Bob’s behavior.
He was always a kind man, never used foul language, and always respected women. But his dementia has changed things. I reassure her that we know the Bob we’re seeing isn’t the real Bob. Her eyes tear up and we hug. She thanks me and says how hard this journey is.”
End-stage, or late-stage, dementia may last from several weeks to several years. As the disease advances, your loved one’s abilities become severely limited and their needs increase. Typically, they:
An estimated 1.8 million people in the United States are in the final stages of dementing illnesses, and each person experiences the illness in their own individual way. The life-expectancy of a person with dementia is unpredictable, according to Dementia Today.
Caring for a loved one with any form of dementia, including Alzheimer’s disease, can become extremely challenging for the patient’s caregivers. Often families do not know where to turn for much-needed help. This is when hospice care can make a huge difference.
In an interview with Dr. Oz, Maria Shriver, daughter of an Alzheimer’s patient and advocate for dementia awareness, says her biggest regret is that she “didn’t act sooner because of all the denial.”
Calling hospice is getting help, not giving up. The sooner you call, the sooner you will gain access to the comfort, support, and quality-of-life hospice care provides.
To qualify, an end-stage dementia patient’s life expectancy must be six months or less, as determined by a physician. However, don’t let any questions you have regarding this qualification, or hospice eligibility criteria, prevent you from calling for hospice services.
Hospice care services focuses on caring, not curing. Hospice care team members help manage pain, anxiety and other symptoms, focusing on your loved one’s physical and emotional comfort. Hospice also supports the family in its caregiving and grief-related needs.
Hospice care is provided by the hospice’s doctors, nurses, home health aides, social workers, spiritual support counselors, and trained volunteers under the direction of the hospice physician and in conjunction with the attending physician.
Learn more about the members of the hospice care team >>
Dementia gradually takes away the person you love and know. As Maria Shriver notes on her website:
“One of the most powerful emotions you may experience when caring for a loved one with dementia is loss. You may feel like you lost the person you knew, you lost the future you believed you had with them, you lost their companionship…or you may quite rightfully feel the pain of losing the lifestyle you once had (because you are going to have to take care of them 24/7).”
Dementia is a unique disease process that creates an unusual situation: the person with dementia gradually recedes from their loved ones while still alive. That is, the family loses the person they loved before physical death occurs. The grief that results from the significant losses in dementia is called dementia grief and it has unique aspects, properties, and processes.
The role of the hospice care team is to support the family caregiver through this type of grief, and the other stresses of tending to a loved one with end-stage dementia. The team ensures patients and families maintain their comfort and dignity, while supporting their best possible quality of life.
Hospice care is provided by the hospice’s, nurses, home health aides, social workers, spiritual support counselors, and trained volunteers under the direction of the hospice physician and in conjunction with the attending physician. The family also plays an important part in caregiving.
Hospice organizations provide a wide range of services for dementia patients and their families. These services include:
The goal of hospice is not to cure a disease, but to control its effects so your loved one can maintain their dignity and remain as comfortable as possible during the phase of end-stage dementia. The benefit of hospice care is that it facilitates the best possible quality of life, as defined by you and your and family.
Most hospice care is provided where the patient lives, whether at home or in a care facility. Some patients receive hospice care in dedicated inpatient hospice facility, if they are experiencing severe pain or other symptoms associated with their terminal diagnosis that cannot be managed in their current setting.
Hospices can vary widely, and their experience serving dementia patients differs. When searching for a hospice program for your loved one with dementia, look for the following:
Hospice care services help families cope with the demands of caring for a loved one with end-stage dementia.
As Glen Campbell’s wife said: “I want to let people know… there’s help out there, they don’t have to do this alone.”
If you or a loved one has dementia or another life-limiting illness, please contact Samaritan to learn how we can help. We can be reached 24/7 at (800) 229-8183, or by email at info@SamaritanNJ.org.
 Lewy Body Association