For patients with dementia, the treatment goals are to manage symptoms and maintain function and quality of life. This can only be achieved if care teams, including hospice nurses, know the latest evidence-based strategies for dementia care. But hospice nurses also recognize the challenges these patients and their families face every day and are ready to help ease their distress and fear.
A growing need for dementia care
Although the rate of dementia worldwide is expected to remain relatively stable for the next three decades, researchers have predicted that the number of people with dementia will grow from 57.4 million cases in 2019 to 152.8 million cases in 2050, according to an article in The Lancet. Researchers attributed these increases mostly to population growth and aging. 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. Because dementia is a terminal condition, hospice nurses can help guide interdisciplinary care teams to start the process of advance care planning. 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.
Hospice nursing supports patients with dementia
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 by:
- Establishing care goals -- Hospice nurses can help families and caregivers have discussions and make decisions concerning end-of-life issues. Care goals should include the patient's and family's wishes and preferences, including those that honor their cultural and religious values.
- Documenting care preferences in advance -- Planning care early in the disease process is a meaningful way to identify, document, and communicate a patient's goals. 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. Hospice nurses can also document issues of personal importance. For example, a person with dementia may wish to have a handmade quilt from a loved one on the bed during their final hours.
- Managing pain and symptoms -- Although cognitive decline is a primary concern with dementia, associated secondary conditions such as pressure injuries, aspiration pneumonia, and contractures can cause pain that needs remedying. Patients with dementia may also have painful chronic illnesses. Untreated pain can reduce physical and cognitive functioning, life expectancy, and quality of life. It also increases the risk for falls and agitation. People with advanced dementia can't always communicate their own pain, and many don't show the typical signs of experiencing pain, which is where the pain assessment in advanced dementia (PAINAD) tool can help. The PAINAD tool scores breathing independently and vocalization, negative vocalization, facial expression, body language, and consolability.
- Providing spiritual and social care -- In addition to physical attention, patients with dementia need their spiritual and social needs attended to, and so do their families.
Choosing strategies for person-centered care
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 patients can soothe them, and playing music or sounds from nature can help them relax. Being prepared for everything allows hospice nurses to remain focused on the needs of patients with dementia, which helps "to avoid the negative outcomes of the past," said Patricia Howell, RN, BSN, WCC, CFCS, a clinical support manager for a medical supply company. "When we know better, we do better." A best practice for dementia care and caregiver support is person-centered care. According to the Alzheimer's Society, person-centered care involves:
- Treating the person with dignity and respect
- Understanding their history, lifestyle, culture, and preferences, including their likes, dislikes, hobbies, and interests
- Looking at situations from the point of view of the person with dementia
- Providing opportunities for the patient to have conversations and relationships with other people
- Ensuring the person has the chance to try new things or take part in activities they enjoy
Howell said a logical approach is for hospice nurses to partner with the patients and families "to empower them and their caregivers to support the life that the [patient] wants to live."
Recognizing challenges and risks
Learning about the different types of issues that arise and how to manage them are important elements of education in dementia care. Physical complications can add to the stress of someone living with dementia and can compound the challenges of providing effective care. Behavior factors may also make interactions with someone living with dementia frustrating and difficult. A person with dementia may at times experience the following physical or behavior issues:
- Decreasing their eating and drinking
- Having balance issues or falls with injury
- Making verbal threats or striking out at others
- Wandering and getting lost
- Being unable to speak, understand others, express thoughts
- Having difficulty managing finances
- Losing personal items
- Having difficulty sleeping enough or sleeping excessively
- Contacting caregivers or family repeatedly
- Developing infections or pneumonias
- Refusing care
Although these issues are common, the needs of a person with dementia can vary from day to day and hour to hour, and their behavior and responses while receiving care can vary just as much. To personalize care, hospice nurses should be prepared to deal with these variations in respectful and effective ways. Simulations can help bring home the challenges and different perspectives of those receiving and giving care, as the Relias video, A Day in the Life of Henry, highlights.
Support for caregivers
According to the Nurse.com continuing education course, Dementia in the Older Adult, dementia care emphasizes the needs of caregivers and considers how to enhance their relationships with the patient.
As the disease progresses, caregivers often experience physical, emotional, social, financial, and other stresses that come with being a family caregiver. Hospice nurses can encourage caregivers to use respite care services, support groups, or home care providers to give themselves necessary breaks and care for their own physical and mental health.
Hospice nurses and other members of the interdisciplinary team can also provide caregivers with:
- Information about dementia such as behavior management strategies
- Information about support groups and resources to ease isolation
- Approaches for finding meaning and focusing on gratitude
- Strategies to address safety concerns
- Resources they can use to address legal and financial issues, including advance directives and appointing medical and financial power of attorney
Caregivers should be provided with evidence-based information, but in a form that is easy to understand and culturally sensitive. Dementia is a complicated disease, but hospice nurses who are well-versed in the complex set of dynamics around people living with dementia can elevate the patient's quality of life. They can also be a port in the storm for families who are witnessing the disease's progression and just want the best for their loved ones. Let us help you prepare for your hospice and palliative nurse certification exam. 
