Finding Quality of Life in End-Stage Dementia Jennifer Malak, RN, BSN, Director-Access, Agrace HospiceCare Jennifer Flugaur, RN, BSN, CPHQ, Director-Quality & Compliance, Agrace HospiceCare
Learn how to incorporate culturally appropriate care for persons with dementia (PWD) at end-of-life Objectives Approaches to facilitate patient-centered goals to enhance quality of life when a person with end-stage dementia can no longer make their needs known Understand strategies to address common communication challenges and symptoms of end-stage dementia
Early Stage Dementia Richard Taylor: There are times now when I become bewildered or befuddled. I m not aware of what's happening around me people can have lucid moments, even in the later stages of Alzheimer s type illness. People can change their minds. Even in the advanced stages, if we take time to listen and explain things to them, they will be more responsive than we usually give them credit for caregivers need to keep driving back, as far as possible, the moment when the patient with dementia is no longer able to voice care preferences anything less is giving up on their 1 humanity..
2 General Dementia Statistics Alzheimer s disease is the most common type of dementia Worldwide-50 million people have a diagnosis of dementia 10 million people are diagnosed every year It is anticipated that by 2050, 152 million people will have a diagnosis of dementia
Dementia: A Quick overview Deterioration in thinking, memory, behavior and the ability to perform everyday activities. (World Health Organization) Not a normal part of aging Progressive symptoms start slowly and gradually get worse One of the major causes of disability and dependence among older people world wide Lack of awareness and understanding Stigma Barriers to Care
Dementia Trajectory
Dementia Staging Early Stage Gradual onset Forgetfulness Word-finding difficulties It is important to address Quality of Life/Goal conversations as soon as possible and at Needing extra help with activities of daily living (ADLs) different stages of the disease as goals may Increased difficulties with communication change. Potential behavior and personality changes Middle Stage Late Stage More dependent on cares/adls Difficulty walking May no longer be able to verbally communicate
Establishing Goals in Early Stage Dementia Important to establish while the PWD can still communicate and make their needs known Create Advance Directives Initiate discussions regarding: Nutrition and Hydration Treatments Antibiotic Use Hospitalization goals CPR status Symptom Management Comfort vs. level of alertness CONSIDER PALLIATIVE CARE SUPPORT!
Palliative care can help people of any age who: have serious illness, but not at end of life, aren t getting enough relief from their medications and treatment, and have trouble leaving home because of their illness. This service can also support a person s family caregivers, because it looks at more than just the medical concerns that affect a patient when someone is seriously ill. Palliative Care
Goals of Palliative Care To help patients/families understand disease trajectory Clarify and review a plan of care Advanced care planning
Quality of Life Considerations: Family Traditions Religion Family Support Job history Culture Traditions Hobbies
3 Providing Culturally Sensitive Dementia Care See everyone as an individual Understand the background/experience of the family of a PWD Understand how culture impacts ethical choices Acknowledge how the PWD s faith background plays a role in their care
Middle Stage Dementia Revisit PWD/family goals This is Me Caregiver support Potential placement/plans for additional help in the home
4 This Is Me Elements: What patient likes to be called (Preferred Name) Caregiver who knows the patient best I would like you to know My background, family and friends (home, pets, treasured possessions) Current and past interests, jobs and places I have lived and visited The following routines are important to me Things that may worry or upset me What makes me feel better when I m anxious or upset
Molly s Movement Video
Caregiver Support and Education Anticipatory Grief and Role Changes Support Groups Encouraging families to advocate for their loved one with dementia Education programs to understand symptoms and what to expect as disease progresses Palliative care consultation to continue to discuss person s wishes, provide emotional support and access to community resources for family members Support in the Community ADRC (Aging and Disability Resource Center) Alzheimer s Association Alzheimer s and Dementia Alliance of Wisconsin Local Senior Centers Adult Day Centers Faith Community
Late Stage Dementia: Managing Comfort Symptom management Communication changes Changes in functioning Additional support available Appetite ADLs Hospice services
Late Stage Dementia Video A film about music and the human spirit
Changes in Perception/Space Pain Symptoms Restlessness/Agitation Infections Sundowning
Changes in Perception/Space Certain dementias can lead to changes in visual centers Changes to peripheral vision Difficulty recognizing faces Less sensitivity to differences in contrast Misinterpretation of shadows Challenges with depth perception Tips for management
Pain Physical signs of pain Non-verbal signs of pain Other signs Potential Treatments/Interventions
Restlessness/Agitati on Always ensure the PWD is safe Potential triggers Treatments/Interventions
5 Sundowning Escalation of behavioral symptoms during particular time of day Typically afternoon or evening Consist of increased confusion, anxiety, agitation, and/or resistiveness to care Some factors that contribute: End of day exhaustion Upset to internal clock Reduced lighting and increased shadows Potential Treatments/Interventions
Infections PWD are more susceptible to infections What types of infections? Important to understand goals related to treatment These goals may change over time
Communication Get person s attention if possible Engage with a smile Speak slowly and calmly Allow time for a response Show actions before doing
General Decline Changes in functioning Sleeping changes Intake Risk for aspiration Skin changes
Hospice Support Hospice benefits Late stage dementia eligibility Varies for each type of dementia Overall: Weight loss (>10%) Albumin < 2.5 Increase in infections Changes in ability to participate in ADLs Communication changes
The Actively Dying Person With Dementia Physical changes alertness Changes in intake Decreased output Hallucinations vs. near death awareness Caregiver grief
I Understand How difficult it must be for you, To watch me become less of the person you once knew. My body is here, but my mind is not. The things we once shared, I may have forgot. This will be our longest goodbye. For the mind of the person you love, is slowing and will die. I will not act or behave like the person I once was. But please remember, it s not something I have control of. I m sorry for this burden I put on you. There will be some rough days, with teary eyes and hearts of blue. But let the love of so many years carry us the rest of the way. Because this is not forever and our souls will meet again one day. By: Joy Rembert
Questions
References 1. 2. 3. 4. 5. NHPCO. (2008). Caring for persons with alzheimer s and other dementias. Retrieved from https://www.nhpco.org/sites/default/files/public/dementia-caring-guide-final. pdf World Health Organization. (2017). Dementia fact sheet. Retrieved from http://www.who.int/mediacentre/factsheets/fs362/en/ Alzheimer s Association. Cultural Competence. Retrieved from https://www.alz.org/resources/diversity/downloads/gen_edu-10steps.pdf Alzheimer s Society. (2018). A support tool to enable person centered care. Retrieved from http://www.alzheimers.org.uk/info/20033/publications_and_factsheets/680/th is_is_me_tool_for_people_with_dementia Alzheimer s Association. (2018). Sleep issues and sundowning. Retrieved from www.alz.org/care/alzheimers-dementia-sleep-issues-sundowning.asp.