DEMENTIA AND PALLIATIVE CARE

Transcription

1 DEMENTIA AND PALLIATIVE CARE Ladislav Volicer, MD, PhD School of Aging Studies, University of South Florida, Tampa, FL and 3 rd Medical Faculty, Charles University, Prague, Czech Republic

2 PROGRESSIVE DEMENTIAS FRONTAL DEMENTIAS Pick bodies Ballooned cells VASCULAR DEMENTIA Nonspecific Histologies After D. Knopman, 1999 ALZHEIMER S DISEASE LEWY BODIES DEMENTIA WITH PAR- KINSONISM

3 Alzheimer s Association Fact sheet March 2013 Alz.org

4 TYPES OF DEMENTIA CARE Aggressive medical care Prolongation of life Comfort Cholinesterase Dignity inhibitors Maintenance Memantine of function Caregiver and PWD support Palliative care DIAGNOSIS DEATH Bereavement

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8 ADVANTAGES OF EARLY DG Obtain appropriate treatment earlier Better manage other medical conditions Take appropriate steps to prevent injury Get greater access to help in the health care system Participate in early stage clinical trials Get genetic counseling, if appropriate Decreased costs ($15,000/patient)

9 SUPPORT WITH DIAGNOSIS Preferably a dyad, however single individuals possible Explanation of the diagnosis Prospects for deterioration, e.g., progression of MCI into dementia Advice on legal and ethical issues (goals of care in different stages of dementia) Contact with support groups if applicable

10 Conversion from MCI to AD within 3 years Holland et al, PLoS One. 2012;7(8):e42325

11 DECREASING RISK OF PROGRESSION Recent NIH conference did not find anything convincingly effective However, some data exist for several strategies Physical exercise Control of blood pressure and cholesterol levels Prevention of head injury Mental exercise Dietary factors (fish, dark chocolate, red wine)

12 MEMORY ENHANCEMENT PROGRAM Independent or assisted living MCI and mild dementia Small group (<15) meeting daily Morning routine A variety of brain exercises Integration with other residents for physical exercises and selected programs

13 Photos have been removed due to copyright issues

14 SAFETY ISSUES Driving Susceptible to scams Living arrangements Injury (unsafe use of appliances) Getting lost Medication compliance Isolation and lack of stimulation

15 MODERATE DEMENTIA Need for assistance with ADLs Speech difficulties Inability to use utensils Confusion Sleep disturbance Behavioral symptoms Main goal of care may be maintenance of function avoidance of hospitalization

16 CAUSES OF BEHAVIORAL SYMPTOMS IN DEMENTIA Graphics have been removed due to copyright issues

17 PAINAD Scale Breathing Independent of vocalization Negative Vocalization Facial expression Body Language Consolability Score Normal Occasional labored Noisy labored breathing breathing Long period of Short period of hyperventilation hyperventilation Cheyne-stokes None Smiling, or Inexpressive Relaxed No need to console Occasional moan or groan Low level speech with a negative or disapproving quality Sad, Frightened, Frown Tense, Distressed pacing, Fidgeting Distracted or reassured by voice or touch respirations Repeated troubled calling out Loud moaning or groaning Crying Facial grimacing Rigid, Fists clenched, Knees pulled up. Pulling or pushing away. Striking out Unable to console, distract or reassure Warden et al,. JAMDA 4, 9-15, 2003 TOTAL

18 Behaviors with negative impact on QOL of patients/residents While solitary While interacting AGITATION/APATHY RESIST/REJECT CARE Behaviors that communicate to others that the patient is experiencing unpleasant state of excitement and which remain after interventions to reduce internal or external stimuli.have been carried out. (Hurley et al, J.Ment.Health Aging, 5,117,1999) Behaviors that are used by a person with dementia to withstand or oppose care: During hands-on care Activities of daily living Administration of medications when redirecting the individual (Mahoney at al., Res.Nurs.Health 22, 27, 1999)

19 RELATIONSHIP BETWEEN SEVERITY OF DEMENTIA AND BEHAVIORAL SYNDROMES Graphics have been removed due to copyright issues 17% 9% 8%

20 FACTORS LEADING TO ABUSIVE BEHAVIOR IN RESIDENTS WITH DEMENTIA Lack of understanding.38** Hallucinations.13**.10* Delusions.31** Depression Resistiveness to care.13**.33**.11*.41**.44** Verbal abuse Physical abuse Partial correlations controlled for resistiveness to care ** p<.001, *p<.005 Volicer et al,. J Am Med Dir Assoc, 10(9):617-22, 2009

21 DIAGNOSIS OF DEPRESSION Clinicians dg 11% Geriatric depression scale (GDS >4) Patients 22% Collateral source 49% Neuropsychiatric inventory (NPI) Collateral source 44% Chopra et al, Aging & Mental Health 12; , 2008

22 MDS diagnosis of depression Negative statements Anger Unrealistic fears Repetitive health complaints Repetitive anxious complaints Sad expression Crying Burrows et al, Age Ageing 2000;29:165-72

23 EFFECT OF COGNITIVE IMPAIRMENT ON DIAGNOSIS OF DEPRESSION Diagnosed (%) Graphics have been removed due to copyright issues CPS score

24 RELATIONSHIP OF AGITATION CHANGES AND DEPRESSION DEPRESSION SCORE PERIODS Volicer et al, Int J Geriatr Psychiatry. 2011

25 DEPRESSION AND REJECTION OF CARE Depression score Period

26 RISK FACTORS FOR PHYSICAL 19% 4% ABUSE Both lack of understanding and depression Only depression 6% 70% Only lack of understanding No risk factors Volicer et al,. J Am Med Dir Assoc, 10(9):617-22, 2009

27 NON PHARMACOLOGICAL TREATMENT OF DEPRESSION Music therapy multiple studies Cognitive stimulation two studies Behavioral activation Therapeutic conversation Simulated Presence Therapy Non invasive brain stimulation investigational Repetitive transcranial magnetic stimulation Transcranial direct current stimulation

28 THE CLUB Continuous programming Activity staff engaging residents After breakfast to before lunch After lunch to before dinner After dinner CNAs provide activities, e.g., trivia, word games, etc, then residents have a beverage and a movie classic Usually on a dementia unit

29 IMPACT OF THE CLUB Variable Before After Χ 2 (t) p Psychoactive medications <.01 Weight: loss <.001 gain 1 11 Social isolation <.01

30 Graphics have been removed due to copyright issues

31 Arch Gen Psychiatry 2003; 60: NPI-NM = non-mood items Nonresponders Partial Full

32 ANTIDEPRESSANT AUGMENTATION Graphics have been removed due to copyright issues

33 ADVANCED DEMENTIA SEVERE Incontinence Inability to ambulate without assistance Inability to eat without assistance Continuing behavioral symptoms Agitation Rejections of care TERMINAL Unable to ambulate even when assisted (bed to chair) Eating difficulties Difficulty swallowing Choking on food or liquids Refusing to eat Intercurrent infections Pneumonia Urinary tract infection Main goal of care may be comfort

34 MEDICAL ISSUES IN ADVANCED DEMENTIA Cardiopulmonary resuscitation Transfer to an acute care setting Use of antibiotics for treatment of intercurrent infections Use of tube feeding

35 MEDICAL INTERVENTIONS CPR - < 2% DISCHARGED ALIVE (Applebaum et al., JAGS 38, 197, 1990) TRANSFER TO A HOSPITAL HIGHER MORTALITY AT TWO MONTHS THAN THOSE TREATED AT NH (Fried et al., JAGS 45, 302, 1997) >50% MORTALITY RATE AT 6 MONTHS AFTER HOSPITALIZATION FOR PNEUMONIA OR HIP FRACTURE (Morrison and Siu, JAMA 284,47,2000)

36 FACTORS CONTRIBUTING TO DEVELOPMENT OF INTECURRENT INFECTIONS Changes in immune function Difficulties in diagnosing infections Incontinence Decreased mobility Aspiration

37 ASPIRATION FOOD AND LIQUIDS PHARYNGEAL SECRETIONS DURING SLEEP 45% OF HEALTHY SUBJECTS 70% IN DEPRESSED CONSCIOUSNESS STOMACH CONTENT COLONIZATION AFTER INHIBITION OF GASTRIC ACID SECRETION

38 PREVENTION OF ASPIRATION Proper positioning during feeding Proper mouth care Chin tuck ineffective Thickened liquids may not help Aspiration occurs more with thicker (increased muscular effort) (Longemann et al, J Speech Lang Hear Res 51,173,2008) Aspiration of clean water not dangerous Thickened liquids cause dehydration and malnutrition (slower stomach emptying and decreased appetite) Campbell-Taylor, JAMDA 9, 523, 2008

39 PHARMACOLOGICAL PREVENTION OF ASPIRATION Drugs ACE inhibitors Dopamine agonists Amantadine Levodopa Cabergoline Theophylline Folic acid Capsaicine Adverse effects Hypotension, renal failure, hyperkalemia Confusion Cardiac valve regurgitation Blood level monitoring

40 PREVENTION OF INTERCURRENT INFECTIONS Meticulous skin care Physical therapy (ambulation) Dietary adjustments Toileting/prompted voiding Avoidance of catheters Decrease residual urine volume Vaccination (less effective)

41 SURVIVAL OF PNEUMONIA IN ADVANCED DEMENTIA 1,0 Cumulative survival 0,8 0,6 0,4 Van der Steen et al, J Am Med Dir Assoc. 13(2):156-61, ,2 no antibiotics 0,0 antibiotics Time since diagnosis (years)

42 Discomfort in Patients whom Died Within 3 months and Patients who Survived Pneumonia 14 Average discomfort (DS-DAT score) Time following treatment decision (days) AB+ patients died AB+ patient survived ABpatients died ABpatients survived Van der Steen et al, JAGS 50: , 2002

43 Kristina L. Szafara et al, Mortality Following Nursing Home Acquired Lower Respiratory Infection: LRI Severity, Antibiotic Treatment, and Water Intake. JAMDA 13(4), , Insufficient fluid intake was defined at diagnosis as less than 1500 ml daily (previous 7 days) or, in the US, evidence that fluid loss exceeds fluid intake (previous 3 days).

44 MANAGEMENT OF FOOD REFUSAL ANTIDEPRESSANT TREATMENT MOOD IMPROVEMENT SERTRALINE (ZOLOFT) DRONABINOL (MARINOL) ALSO IMPROVEMENT OF DISTURBED BEHAVIOR

45 FEEDING TUBES IN DEMENTIA Are of unproved benefit in: Ensuring adequate nutrition Preventing pressure sore or help in healing them Preventing aspiration pneumonia Providing comfort Improving functional status Extending life

46 SURVIVAL OF RESIDENTS WITH SEVERE DEMENTIA... with feeding tube without feeding tube Mitchell et al, Arch Int Med 157:327, 1997

47 DISADVANTAGES OF TUBE FEEDING l Discomfort, restraints l Lack of taste of food l Lack of contact with caregivers l Complications diarrhea and cramps nausea, vomiting, abdominal distention tubal obstruction and migration infection and leakage of stoma

48 PREVENTION OF TUBE FEEDING Palliative philosophy of care Early discussion of advance directives Continuous effort to feed patients by natural means Maintaining quality of life Continuous communication with patients families

49 ADVANTAGES OF TERMINAL DEHYDRATION Decreased secretions Upper respiratory tract cough, suctioning Digestive tract diarrhea, vomiting Less urine formation decubiti Analgesia increased levels of endorfins (co-secretion with vasopressin) in rat brain (Majeed et al, Neuroendocronology 42:267, 1986)

50 DISADVANTAGES OF TERMINAL HYDRATION Edema many patients require diuretic therapy (Lanuke et al, J Pall Med, 7,257,2004) 47% during intravenous hydration 5% during hypodermoclysis Discomfort for patients Increased secretions Restraints

51 PVS IN ALZHEIMER S DISEASE 12 patients unable to eat independently, respond to command, walk, incontinent 9.4 years history, 43 months instituionalization No agreement among three neurologists on any patient Volicer et al, Arch.Neurol. 54, , 1997

52 NAMASTE CARE Presence of others group room, carer always present (7 days/week, 5hrs/day) Comfortable environment reclining chairs, bird sounds, relaxing music, lavender scent Individualized care hand and foot massage, ADL as meaningful activities Easy to implement, no additional staffing J. Simard: The End-of-Life Namaste Care Program for People with Dementia, Health Professions Press 2007

53 Results of MDS Namaste Study Increased interest in residents who are withdrawn or socially impaired Decreased agitation in residents with mild or moderate dementia Less episodes of the following: Being distracted Altered perception or awareness of surroundings Disorganized speech Variability of mental function during the course of day

54 Medication reduction during Namaste Care (n=9) Number of residents Jan Greenaway, Biggar, Scotland, personal communication

55 People do not consist of memory alone. They have feeling, will, sensibility, moral being. It is here that you may touch them, and See a profound change. A. Luria