Hospice Care Considerations for People With Dementia

With the rise in life expectancy and increased risk of dementia in older adults, the demand for nurses who are trained to care for people with dementia is also growing. Near patients’ final days, they and their families can greatly benefit from hospice professionals who understand how to provide specialized care for dementia.

About one in nine people in the U.S. age 65 and older have Alzheimer’s disease. According to the Alzheimer’s Association 2022 Alzheimer’s Disease Fact and Figures report, this population is projected to grow from 58 million in 2021 to 88 million by 2050.

The percentage of Medicare hospice beneficiaries dying with a diagnosis of dementia or Parkinson’s disease, some of whom have dementia, has increased from 9% in 2002 to almost 21% in 2019, according to the National Hospice and Palliative Care Organization’s Facts and Figure Report 2021 Edition. Dementia has a long, variable course, making prognostication and determining hospice eligibility difficult.

All forms of dementia progress to end stage and are incurable. Unfortunately, many primary care professionals don’t anticipate that dementia will become a terminal condition and don’t start the process of advance care planning early in the disease trajectory. The process helps primary care professionals identify a person’s care goals and document and communicate their medical and personal preferences.

“If primary care professionals don’t consider dementia to be a terminal disease, they can lose the opportunity to explore the person’s end-of-life wishes as their cognitive abilities decline,” said Relias lead content writer Susan Heinzerling, BSN, RN, CHPN, who developed the course Managing Advanced Dementia in Hospice.

Once hospice care is appropriate, the hospice team will need to identify the family’s wishes if the patient did not express end-of-life goals in advance.

Below are four ways hospice can provide care for people with dementia.

Establish goals of care

Hospice professionals can help families and caregivers have discussions and make decisions concerning end-of-life issues. Establishing the goals of care should include any previously documented wishes of the patient and family preferences, while honoring their cultural and religious values.

For instance, what are the plans for nutrition when the person with dementia has difficulties eating or drinking?

“Families often struggle to understand nutrition and eating issues related to dementia and should receive ongoing education,” said Heinzerling. Handfeeding is recommended in advanced dementia instead of tube feeding, and families need information about why that is recommended.

Heinzerling added that people with advanced dementia generally have poor outcomes from hospitalizations. Considering the risks and benefits, the hospice team should discuss wishes for hospitalization with the family well before an acute event. Even if there is a written directive not to send the person to the hospital, families may request to override that in some scenarios, so it is best to talk those through in advance.

Document care preferences in advance

Planning care early in the disease process is a meaningful way to identify, document, and communicate a patient’s goals of care. This ensures that the family and the care team honor the patient’s wishes like determining do not resuscitate (DNR) status, using ventilator support, and providing enteral feedings.

Such planning can also address issues of personal importance. For instance, a person with dementia may wish to have a quilt a loved one made on the bed during their final hours.

Manage pain and symptoms

While advance care planning is important, so is managing the day-to-day symptoms. Although cognitive decline is a primary concern with dementia, painful secondary conditions can be associated with dementia, like pressure injuries, aspiration pneumonia, and contractures.

All of these can cause pain and need to be treated by the care team. Untreated pain can reduce physical and cognitive functioning, life expectancy, and quality of life, and increase the risk for falls, agitation, and other behaviors.

People with advanced dementia can’t always communicate regarding their own pain, and many don’t show the typical signs of experiencing pain. Your care team can be trained to use the pain assessment in advanced dementia (PAINAD) tool to screen for pain. The PAINAD tool scores:

• Breathing independently and vocalization
• Negative vocalization
• Facial expression
• Body language
• Consolability

If the person with dementia also has a chronic illness that causes pain, hospice and palliative care can help manage symptoms and provide comfort at the end of their lives.

Provide spiritual and social care

In addition to the physical attention that patients with dementia need, spiritual and social essentials must also be met. And patients aren’t the only ones who need this support — oftentimes, patients’ families need as much – if not more – psychological support as their loved ones.

Medicare hospice respite care is a short-term inpatient stay available to beneficiaries and designed to alleviate caregiver fatigue. The hospice care team can refer families to resources for help with finances, family stress, isolation, ways to focus on gratitude, and finding meaning.

“The hospice team may be able to help families address old conflicts and achieve forgiveness,” said Heinzerling. “They can also help families process grief and say goodbye.”

When a patient suffers from severe memory loss, emotional or spiritual comfort is hard to provide. A National Institute on Aging blog suggests targeting the patient’s hearing, touch, or sight senses to bring comfort. Touching or massaging the patient can soothe them, and playing music or sounds from nature can help them relax.

Implementing these strategies will ensure your hospice care team is well-equipped to reduce the likelihood of hospitalization for people with dementia in the last 30 days of life, improve pain management, and support their caregivers.