Palliative Care in Advanced Dementia

Abstract

Dementia syndrome is common and expected to increase significantly among older people and characterized by the loss of cognitive, psychological and physical functions. Palliative care is applicable for people with dementia, however they are less likely to have access to palliative care. This narrative review summarizes specifics of palliative care in advanced dementia. Most people with advanced dementia live and die in institutional care and they suffer a range of burdensome symptoms and complications. Shortly before dying people with advanced dementia suffer symptoms as pain, eating problems, breathlessness, neuropsychiatric symptoms, and complications as respiratory or urinary infections and frequently experience burdensome transitions. Pharmacological and nonpharmacological interventions may reduce symptom burden. Sensitive observation and appropriate assessment tools enable health professionals to assess symptoms and needs and to evaluate interventions. Due to lack of decisional capacity, proxy decision making is often necessary. Advanced care planning is an opportunity establishing values and preferences and is associated with comfort and decrease of burdensome interventions. Family carers are important for people with advanced dementia they also experience distress and are in need for support. Recommendations refer to early integration of palliative care, recognizing signs of approaching death, symptom assessment and management, advanced care planning, person-centered care, continuity of care, and collaboration of health care providers.

Palliative Care of the Patient with Dementia

“…Palliative care focusing on quality of life for people with advanced dementia can improve symptom burden, prevent under treatment of symptoms and overtreatment with unnecessary and burdensome treatment, and can also reduce caregiver burden and enhance caregiver quality of life. 18 Some of the distressing symptoms that Palliative Care can assist with are agitation, swallowing difficulties, pain, and hallucinations.…”

“…Many people with advanced dementia experience pain; it is one of the most common symptoms and persists over the course of disease. 25 Untreated pain can present as depression, agitation, and challenging behavior due to a person's inability to express the source of their pain. Pain is subjective, yet patients with dementia are limited when it comes to self-reporting their pain.…”

“…Communication restrictions and restrictions in memory and executive function hinder the person in communication of their pain. 25 The Pain Assessment in Advanced Dementia (PAINAD) scale is a frequently used tool. It evaluates behavioral categories breathing, vocalization, facial expression, body language, and consolability as indicators of pain.…”

Comment on: Adopting a palliative approach to dementia care in the community: a participatory action research

“…While various dementia staging tools are available, the dual problems of great heterogeneity in the progression of dementia and difficulty predicting the stage when palliative care is required pose challenges for both family caregivers and healthcare professionals. (5) Barriers to providing palliative care for dementia include poor recognition of the fact that dementia is a terminal illness; a protracted course with variable illness duration, unlike cancers; lack of capacity among PwDs in an advanced stage to convey their needs and wishes; lack of knowledge and skills among healthcare professionals regarding end-of-life (EOL) care for PwDs; and inadequate caregiver resources to provide care for the PwDs to die at home or to participate in EOL care in a nursing home setting, with the goal of achieving a dignified death.To address some of these challenges and barriers, our dementia service at G-RACE (Geriatric psychiatry out-Reach Assessment Consultation and Enablement) designed three caregiver workshops for the three stages of dementia according to the third edition of the Diagnostic and Statistical Manual of Mental Disorders from the American Psychiatric Association, or DSM-III-R, with each workshop addressing different care needs pertaining to each stage of dementia. Workshop One covers topics on general health maintenance through control of vascular risk factors and lifestyle changes, introduction to advance care planning and legal matters such as lasting power of attorney, communication strategies, cognitive activities to slow dementia-related decline, as well as community resources.…”

“…While various dementia staging tools are available, the dual problems of great heterogeneity in the progression of dementia and difficulty predicting the stage when palliative care is required pose challenges for both family caregivers and healthcare professionals. (5) Barriers to providing palliative care for dementia include poor recognition of the fact that dementia is a terminal illness; a protracted course with variable illness duration, unlike cancers; lack of capacity among PwDs in an advanced stage to convey their needs and wishes; lack of knowledge and skills among healthcare professionals regarding end-of-life (EOL) care for PwDs; and inadequate caregiver resources to provide care for the PwDs to die at home or to participate in EOL care in a nursing home setting, with the goal of achieving a dignified death.…”