Beth Schoenfeld, RN, MSN, CDP, CDI

Transcription

1 Beth Schoenfeld, RN, MSN, CDP, CDI Mrs. B is a 75 year old, retired teacher living at home with family and paid caregivers. She has had AD for 6 years. She is bedbound for last 6 months, is not able to feed herself, but can swallow and eats fairly well when she is fed by hand. Mostly non verbal, responsive at times to family voices. Hospitalized for pneumonia 2 times and after antibiotics has returned home to the same or reduced functional status. She did develop pressure ulcers during her last hospitalization and they seem painful. She also has osteoarthritis. Mrs. P, 76 and diagnosed with AD 5 years ago. She is mostly non-communicative, follows most directions with cues, but will not initiate movement or action. She remains continent as long as on a voiding schedule. In the last several weeks she has become diaphoretic for no apparent reason, experienced a decrease in appetite, and developed an abnormal gait. She experienced a fall requiring a trip to the ER for stiches. After two weeks, her cognition and mobility has not returned to baseline and she is now bedbound, incontinent, and refusing food and fluids 1

2 Dementia is a global impairment of physical, functional, and mental decline with personality change and lost communication which lasts an average of 6-9 years. 5.4 million people with AD, thought that may be as many as 10 million with all types of dementia. 1 in 3 seniors die with a form of dementia. By 2025, an additional 30% of people will be living with AD Medicare spending will need to increase 600%, Medicaid spending by 400% 81% of patients who meet the criteria for dementia have never received a diagnosis 2013 Alzheimer s Facts and Figures 2

3 Approaching Death Institute of Medicine. National Academies Press, Washington DC The National Center for Health Statistics did not include Alzheimer s Disease as a cause of death until 1994 Disease lasts an average of 6-9 years, but may last as many as 20. Most often, those with dementia are in the severe stage for as long as 1-3 years. 6 th leading cause of death, 5 th in those over 65 Surveys have shown that more than 90% of family members and professionals want a palliative care option for dementia Approach emphasizes comfort care through the disease process Considers treatment burdens as well as benefits, including medications (reactive behaviors when meds administered, spitting, agitation) 3

4 Hands on care such as massage, oral hygiene, diet, and hand feeding can prevent infection and manage feeding with out feeding tubes Reduce or eliminate ICU and hospitalizations which often do not extend life and cause PWD and families more stress and discomfort Better pain management, communication and family support So why aren t more of us using a palliative approach with dementia clients? FAST Scale-not developed to be a prognostication tool. Only works for Alzheimer s type dementia In one study, the FAST criteria could not be applied to approximately 41% of the persons with dementia because their disease had not progressed in the ordinal sequence of the scale Luchins DJ, Hanrahan P, Murphy K. Criteria for enrolling dementia patients in hospice. J Am Geriatr Soc. 1997; 45:

5 Incontinent, can t perform ADL s Inability to communicate more than a few words Non-ambulatory May also have one of the following in the past 12 months: delirium, infection, stage 3-4 pressure ulcer, recurrent fever, 10% weight loss or albumin less than 2.5% Dementia clients admitted to hospice actually declined from 13% (2010) to 12.5% (2011) while hospice use is increasing Estimates of dementia of all types 8 million in US. In 2011, only 132,375 received hospice with diagnosis of dementia. Represents 1.65% of dementia patients. No training requirements for dementia in home care Most MD s have not had training in dementia Families are often unaware of disease progression and how to help 5

6 Cost Length of caregiving Requires different skill set as stages change Caregiver stress/burden/denial Poor caregiver support 44% of family caregivers experience depression. Burdened caregivers have a 63% increased mortality rate PWD is often unappreciative, resist caregivers Family dynamics Agnosia Amnesia Aphasia Executive functioning Apraxia Functional limitations-adl s, iadl s, nutrition, continence, sleep Behavioral-apathy, depression, agitation, wandering, restiveness to care Pain Delirium, depression, anxiety Infections-4 times more likely to get UTI, 7 times more likely to get pneumonia Constipation Other common diagnoses: COPD, HTN, Stroke, Osteoarthritis, Diabetes 6

7 Receive less pain meds than those cognitively intact Express pain through their emotions and behaviors Traditional pain scales don t work Dementia specific pain assessment: PAINAD Must investigate to determine pain causes Angry affect and agitation may be main symptom of depression Research found that treatment with SSRI improved affect in 8 out of 10 persons with severe dementia who where identified as clinically depressed Requires specific dementia specific depression scales, such as Cornell Scale for Depression Volicer et al (1994) Advanced directives in dementia Hospitalizations Swallowing/weight loss/tube feeding IV hydration/antibiotics Mobility and falls 7

8 Two differences in dementia and most others receiving hospice: Person with dementia cannot decide about involvement in a hospice program and treatments themselves There is nearly always a communication deficit and behavioral problem Respect for elders and MD s Dementia considered mental weakness or shame End of life decisions Guilt/expectations Pain may be considered making amends for past Death rituals 8

9 A new environment and routine, unfamiliar faces, combined with invasive procedures, bed rest and new med often escalates fear, anxiety and discomfort Hospital admission of person with AD increases mortality rate 5.4 times In studies where families were aggressively educated about end of life stage and dementia, do not hospitalize orders increased from 2-4% to 62% Easily distracted Pocket food Refuse food: turn head, won t open their mouth, bite spoon Decreased smell, taste, and appetite Gagging, choking, coughing Persons with advanced Alzheimer s weigh 21% less than those without dementia Body functions are naturally slowing down: constipation Apraxia, agnosia, amnesia, aphasia, environmental influences, primitive reflexes In studying cancer patients, found that even without substantive food and fluids, they were not hungry or thirsty. Adjust the texture of the diet, use supplements, choose foods carefully, and use creative feeding techniques 9

10 Coughing after fluids or foods Wet voice after eating Pocketing food Taking longer to swallow or requiring multiple swallows Drooling Increased congestion or runny nose after eating Frequent bouts of pneumonia or URI May not sense food or liquid in the airway and may not cough or give any indication that aspiration occurred Artificial nutrition has not been shown to prolong life, prevent pneumonia or aspiration or malnutrition, or to improve comfort Removal of a tube once placed feels much more dramatic than not inserting in the first place 5% morbidity and mortality with the procedure itself Complications: diarrhea, cramps, nausea, vomiting, abdominal distention, restraint use Associated with less human contact Antibiotic use or fever in advanced dementia showed no better improvement in survival or comfort Oral antibiotics are preferable at the terminal stage Studies estimate that the probability of death, with or without antibiotics, approaches 50% as person becomes more advanced May have burdensome side effects Relative dehydration may be adaptive, decreasing and thickening oral secretions to reduce aspiration. 10

11 Decreased attention span/less ability to sort environmental clutter or multi-task while walking Perceptual deficits relating to interpretation of fall risk/visuospatial changes Impulsivity Less coordinated motor movements Side effects of commonly prescribed meds Behaviors: wandering, agitation Abnormal muscle tone, joint rigidity, and inability to relax muscles voluntarily Visual changes Hearing Perceptual issues Cognitive Changes Boredom/depression Stress threshold Caregiver interaction Inability to initiate, plan, and organize Perceptual difficulties Communication Attention span Fatigue Must know the client and past history 11

12 Visits can be stressful for family and they may distance themselves to avoid pain Some will stop visiting Don t know how to have a positive interaction In 2009 study found in the final 3 months of life, 41% developed pneumonia, 52% febrile, 85.8% eating problems Also found 46% dyspnea, 39% pressure ulcers, 38.7% agitation Increased respiratory rate was documented in 80% 1-19 days prior to death, irregular 80% had severely decreased urinary output 1-4 days before death Muscles of tongue and palate weaken and sag Restlessness was found in 50% 4-6 days before death Dementia is different and requires environmental and caregivers to change There is a general lack of knowledge regarding dementia Family burden is high Dementia often lasts many years Palliative care concept should be introduced earlier End of life decisions are complicated by cognitive and communication losses Many dementia clients receive burdensome procedures at end of life 12

13 Amella, EJ. Feeding and Hydration Issues for Older Adults with Dementia. Nurs Clin N Am ; Aminoff,BZ, AdunskyA. Their Last 6 Months: Suffering and Survival of End-Stage Dementia Patients. Age and Aging : Dormer, B. A practical Approach to Nutritional Care of Dysphagia Gallagher, M, Long C. Demystifying Behaviors, Addressing Pain, and Maximizing Comfort Research and Practice: Partners in Care.Journal of Hospice & Palliative Nursing. 2011; 13(2) Gordon M, Baker N. (2010) Late Stage Dementia: Combining Compassion and Care: A Guide for Health Care Professionals and Families, Toronto, Ontario Hall G, Buckwalter K. Progressively Lowered Stress Threshold: A Conceptual Model for Care of Adults with Alzheimer s Disease. Arch Psychiatric Nurse. 1987;1(6) Javier, N. Palliative Care for the Nursing Home Resident with Dementia. Medicine &Health/Rhode Island. 2010; 93(12) 3 Lee, TJ, Kolasa, M. Feeding the Person with Late-Stage Alzheimer s Disease. Nutrition Today. 2011;46(2) Martin G, Sabbagh M. Palliative Care for Advanced Alzheimer s and Dementia: Guidelines and Standards for Evidence-Based Care New York: Springer Publishing Company Mitchell SL, Kiely DK, Hamel MB. Dying with Advanced Dementia in the Nursing Home. Arch Intern Med. 2004: 164(3): National Hospice and Palliative Care Organization (NHPCO). Caring for Persons With Alzheimer s and Other Dementias: Guidelines for Hospice Providers. Alexandria, VA: National Hospice and Palliative Care Organization; Purillo RB. Ethical Foundations of Palliative Care for Alzheimer s Disease John Hopkins Press Sachs, G.A., Shega, J.W., & Cox-Hayley, D. (2004). Barriers to excellent end-of-life care for patients with dementia. Journal of General Internal Medicine, 19, Sampson,EL, Burns,A, Richards M. Improving End-of-Live Care for People with Dementia. British Journal of Psychiatry , Volicer,L. End-of-Life Care for People with Dementia in Residential Care Settings Copyright by the Alzheimer s Association Volicer L, Hurley A. Hospice Care for Patients with Advanced Progressive Dementia New York: Springer Publishing WSJ.com. New Push for Early Testing Treatment for Dementia. February,