E L N E C Geriatric Curriculum EndofLife

E L N E C Geriatric Curriculum End-of-Life Nursing Education Consortium SESSION 9: End-of-Life Care for the Dementia Patient Fairfield University School of Nursing ELDER Project E L N E C Geriatric Curriculum

Objectives: Upon completion of this session, the learner will be able to… 1. 2. 3. E L Identify signs of advanced dementia. Discuss effective strategies that can be used to enhance communication with patients with dementia. Examine the pain experience of adults with dementia. N E C Geriatric Curriculum

Hospice for Patients with Advanced Dementia • Only 11% of nursing home residents with advanced dementia are referred to hospice • < 1% of hospice patients have primary diagnosis of dementia Mitchell et al. , 2004 a, 2004 b & 2005 E L N E C Geriatric Curriculum

Ways Dementia Can Impact the Person’s Communication • • • Aphasia Agnosia Anomia Apraxia Losing train of thought • Word salad • Withdrawal E L N E C Geriatric Curriculum • • • Perseveration Paraphrasia Using curse words Speaking less Reliance on nonverbal gestures • Reverting to a foreign language

Patients with dementia who are eligible for hospice must have one or more dementia-related complications in past year: … • Upper respiratory infection • Septicemia • Multiple pressure ulcers, stage 3 -4 • Fever recurrent after antibiotics • Aspiration pneumonia • Insufficient fluid/food intake with 10% wt loss in prior 6 mos or serum albumin < 2. 5 gm/dl E L N E C Geriatric Curriculum

Signs of ADVANCED DEMENTIA • MMSE score of 9 -0 • Memory & Thinking – Severely impaired memory for recent and past events • Language – Unable to carry on a meaningful conversation • Mood – Appears withdrawn – Difficult to engage • Function – Has difficulty interacting/responding to surroundings – Forgets how to walk without help; may lead to eventual loss of body movement © 2011 Hospice of the Valley http: //www. hov. org/disease_progression. aspx E L N E C Geriatric Curriculum

ADVANCED DEMENTIA • Relies totally on caregivers for: – Dressing – Grooming – Bathing – Feeding – Bladder/bowel • May forget to chew food or swallow • May lose ability to sit up, hold head up and/or smile © 2011 Hospice of the Valley E L N E C Geriatric Curriculum http: //www. hov. org/disease_progression. aspx

Tips for Communicating with Patients with Dementia • Distract, distract!!!! • Do not try to re-orient to reality. • Patient can not remember or learn new things. • Join the journey! E L N E C Geriatric Curriculum

Behaviors When Talking with Patients With Dementia • • • E L Smile Use humor Do not argue or confront Be positive Know the person/resident YOU do most of the work in communicating! N E C Geriatric Curriculum

Barriers of Palliative Care Lack of Identifying and Lack of awareness of the addressing knowledge end stage symptoms about patient wishes Lack of care Pressure for Not planning aggressive acknowledging treatments that Dementia is terminal (Nursing & Residential Care, August 2009, Vol 11, No. 8, page 400) E L N E C Geriatric Curriculum

Decision-Making • • • Advance directives Care planning Care decisions üCPR üInvasive medical procedures & tests üHospitalizations üICU/ventilators üArtificial nutrition & hydration üUse of antibiotics üUse of preventive health screenings E L N E C Geriatric Curriculum

Is it Pain? Pay particular attention to changes from normal behaviors E L N E C Geriatric Curriculum

Behavioral Symptoms • • • E L Changes in attention span Changes in level of arousal Agitation Changes in mood/affect Hallucinations Withdrawal from others Groaning/calling out Facial grimacing Striking out or other physical gestures of discomfort and distress N E C Geriatric Curriculum

Behavioral/Observational Cues Obvious: • • Grimacing or wincing Bracing Guarding Rubbing Less Obvious: • • E L Changes in activity level Sleeplessness, restlessness Resistance to movement Withdrawal/apathy Increased agitation, anger, etc. Decreased appetite Vocalizations N E C Geriatric Curriculum

Pain • • • E L Associated with aging Co-morbidites Immobility Urinary tract infections Decubitus ulcers N E C Geriatric Curriculum

Reference: Warden, V. , Hurley, A. C. & Volicer, L. (2003). Development and psychometric evaluation of the Pain Assessment in Advanced Demetia (PAINAD) scale. Journal of the American Medical Director Association, 4(1), 9 -15. E L N E C Geriatric Curriculum

Empirical Trials in Nonverbal Residents Try pain medicine Behaviors suggest it could be pain Behaviors decrease It’s probably pain! E L N E C Geriatric Curriculum

Nutrition and Hydration • • • E L Progressive loss of appetite Loss of ability to swallow Increase risk of aspiration Become resistive and indifferent to eating Have difficulty handling food in their mouth Increased risk for choking N E C Geriatric Curriculum

The use of feeding tubes is not associated with good outcomes! Feeding tubes do not prevent malnutrition pressure ulcers, or aspiration pneumonia. Feeding tubes have not been proven to promote comfort or prolong survival. Care givers are encouraged to feed patients as long as possible! E L N E C Geriatric Curriculum

Infections • Common in end-stage dementia • Use of antibiotics is controversial at EOL • Frequently prescribed in the last 2 weeks of life E L N E C Geriatric Curriculum

Some things family can do… 1. Moistening the mouth 2. Massaging hands and feet 3. Play music 4. Read to their loved one 5. Bring in familiar objects and pictures 6. Hand holding 7. Life review (next slide) E L N E C Geriatric Curriculum

Life Review - Everyone’s life has a story to tell! • post “biography” cards with a photo and a brief description of the highlights of a resident’s life. • Sometimes this information is posted outside the patients’ door or in his room. E L N E C Geriatric Curriculum

Case Discussion Activity E L N E C Geriatric Curriculum

Opportunities for High-Quality EOL Care in Nursing Homes • Daily intensive interaction over time • Family-like relationships between residents and staff • Home-like atmosphere • History of caring for the dying • Expertise in dementia care Ersek & Wilson, 2003; Hanson & Ersek, 2006 E L N E C Geriatric Curriculum

References City of Hope & the American Association of Colleges of Nursing, 2007; Revised, 2010. The End-of-Life Nursing Education Consortium (ELNEC)- Geriatric Training Program and Curriculum is a project of the City of Hope (Betty R. Ferrell, Ph. D, FAAN, Principal Investigator) in collaboration with the American Association of Colleges of Nursing (Pam Malloy, RN, MN, OCN, Co-Investigator). The Resource Center of the American Alliance of Cancer Pain Initiatives 14 © University of Wisconsin Board of Regents 2006 © 2011 Hospice of the Valley http: //www. hov. org/disease_progression. aspx Supported by DHHS/HRSA/BHPR/Division of Nursing Grant # D 62 HP 06858 E L N E C Geriatric Curriculum