Palliative Care for Dementia

Dementia is a term used to describe a range of conditions that cause irregular changes in the brain. These brain changes may lead to challenges and loss of memory, judgment and reasoning. It may lead to difficulty identifying familiar people, the inability to recognize familiar surroundings, finding the correct words and completing once familiar tasks.

Due to this decline in brain function, daily life may be affected. There may be limited independence as well as a change in mood, behavior and in personal relationships. Due to these symptoms affecting quality of life, palliative care may be a good option for patients diagnosed with dementia (as well as patients with Alzheimer’s disease).

What is Palliative Care

Palliative care is a holistic approach to comfort care provided by a team of specialized healthcare professionals. It is used to improve the quality of life for those at any age and diagnosed with a serious condition regardless of the stage. Palliative care may help with symptom management, pain management, assist with understanding the condition and provide emotional and spiritual support to the patient, their family and caregivers.

Learn more about palliative care.

What is End of Life Care

Palliative care and end of life care, such as hospice care, are often confused. Although end of life care is a type of palliative care, palliative care can begin at any stage of the illness or condition and it may be done alongside a curative treatment. End of life care focuses on comfort care for patients diagnosed with a terminal illness and a limited life expectancy, usually six months or less.

Read more: Hospice vs palliative care

For many, dementia can have a wide time range between diagnosis and terminal stages. Timeframe of the condition and decline can be difficult to predict. The point at which a patient with dementia enters stages of palliative care depends on their capabilities and a physician’s referral. See the 5 stages of palliative care to understand when a patient with dementia may benefit from palliative care.

How Does Palliative Care Support People With Dementia

Dementia is a progressive syndrome with life limiting qualities and no cure. As patients age, dementia diagnosis is common. Palliative care focuses on improvement of quality of life in those with advanced dementia by managing symptoms and treatment side effects, reducing caregiver responsibility, as well as improving caregiver quality of life (especially when it is a family caregiver).

Despite evidence that supports early palliative care providing benefits for dementia patients, some barriers may exist. Barriers include: early phases of diagnosis may be time consuming and not clear cut, limited access to palliative care, difficulty with symptom identification and management, patient communication issues, high burnout rate for caregivers and insufficient resources to name a few.

However, patients with dementia in the advanced phases have individual needs and palliative care may provide support. Early palliative care support may decrease the need for future interventions such as hospitalizations.

Specifically, the palliative approach to comfort and medical care may support patients with dementia as well as their families and caregivers by:

Treating symptoms (depression, anxiety and sleeping troubles)
Providing education about dementia (behaviors, triggers)
Assisting in maintaining a daily routine
Providing physical therapy and memory therapy
Managing symptoms from other medical conditions
Assisting in planning for the future, such as choosing care locations (at home, in an assisted living facility or nursing home)
Help with any spiritual needs by connecting patients with local spiritual support

According to the Center of Advanced Palliative Care, the time between diagnosis and end of life for dementia is about eight to ten years. However, dementia can be prolonged as long as twenty years or more. Forty percent of the dementia time frame is spent in the advanced stages. Palliative care can bring support for years.

Dementia-capable palliative care is specific to dementia. It consists of tools and methods that evaluate and address patient distress in advanced dementia. It uses a pain assessment tool that is behavior-based. There is scheduled pain medication, food offered in small amounts more often, flexible routines (such as eating) as well as a focus on balance between activity and rest. Individual needs are emphasized.⁴

End of Life Care

Palliative care is all about improvement of quality of life for the patient. Providing palliative care and transitioning to end of life care at the final stages of dementia can have challenges because the patient may have trouble communicating their needs and wishes. Planning end of life care should happen as soon as possible. An advance directive is one way to ensure current and future medical wishes are met (such as various treatment and intervention do’s and don’ts).

What Does the Palliative Care Team Look Like for People with Dementia

A care team supports the patient with dementia, their family and caregivers. Palliative care specialists may help the patient and their families by: ensuring understanding of the illness as it progresses, managing individual goals, needs and symptoms, addressing safety of the patient and coordinating medical needs with the palliative care team and other doctors.⁵

The palliative care team for someone with dementia may include: a team of doctors, nurse and nurse practitioners, social workers, chaplains, family members and caregivers. Each palliative care team is individualized to the patient and each patient may receive different types of care depending on personal needs and goals.

Elements of palliative care team may include:

Management of symptoms: this aspect of the plan includes addressing symptoms and improving overall well-being. The care team such as trained physicians and nurses may help answer questions like how prescription drugs affect treatment.
Advice and emotional support: dementia may cause situations to arise and palliative care may help with decisions regarding the illness. A social worker, chaplain or religious leader may address elements of stress, questions or concerns as well as coping mechanisms with death. A community connection or referral may be made.
Care techniques: This aspect of palliative care may offer a sense of well-being for the patient and their family. This may include complementary therapy such as music and yoga.
Making referrals: A palliative care expert might seek out other doctor referrals as needed.
Advance care planning: A member of the palliative care team may discuss future goals and wishes and help develop wills, advance directive and power of attorney.

FAQs

How Long Do Dementia Patients Live in Palliative Care?

Dementia can be a difficult condition to provide a diagnosis and prognosis. Patients may be referred to a palliative care team as soon as there is a doctor’s diagnosis. Timeline of care could be weeks to years.

Are Dementia Patients Eligible For Palliative Care?

Yes dementia patients are eligible for palliative care as provided by a doctor’s diagnosis and referral.

Support For Dementia Caregivers:

Beginning the journey of diagnosis may be challenging. Prepare for a dementia appointment with a doctor.
Palliative care can provide just as much support for the family and caregivers to the patient with dementia. Find a palliative care team.
It is essential to plan for the future and create a health directive when coordinating care for a patient with dementia.
Caregiving for dementia can be challenging. Find caregiver support for dementia and Alzheimer’s disease as well as tips for caregivers.