End stage dementia and palliative care
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End stage dementia and palliative care
- 1. Toluwalase Ajayi MD Palliative Care Fellow San Diego Hospice and Institute for Palliative Care
- 2. Objective The overall objective of this talk is to understand how dementia is unique and important in our line of work and how we, as a multidisciplinary palliative care team can help patients’ and their families navigate through the challenges of this disease.
- 3. Central Intelligence Agency 2011. Statistics Division 2010, Social indicators, Indicators on health.
- 4. Epidemiology Population > 65 expected to increase from 12.6% in 2010 to 19.3% in 2030 > 80 years increase from 3.7% to 5.1% Life expectancy increase to 79.5 by 2020 US Census Bureau Accessed July 22, 2010. US Census Bureau. Expectations of life at birth.
- 5. Epidemiology Dementia increases exponentially with age 1% at 60 yrs to more than 20% at 85 yrs People with dementia estimated to reach 81.1 million by 2030 O’Connor DW. Ferri CP et al.
- 6. Definition Dementia: significant deterioration in cognitive abilities severe enough to interfere with everyday life Palliative care: Improves quality of life for patients and families O’Connor DW.
- 7. Definition Most frequent cause is Alzheimer followed by vascular dementia and then dementia with Lewy body ( DLB ) Langa KM, et al.
- 9. Vascular Dementia Memory Impairment Neuropsychiatric Symptoms Main Features Neurologic signs Lussier et al.
- 10. Lewy Body Dementia Memory Impairment Neuropsychiatric Symptoms Main Features Neurologic signs Lussier et al.
- 11. Dementia Memory Impairment Neuropsychiatric Symptoms Main Features Neurologic signs Contented Dementia Trust
- 12. Secondary Symptoms Urinary Incontinence ( 72% )-Please refer to module #... Pain ( 64% )- Please refer to module #... Depression/Low Mood ( 61% )- Please refer to module #... Constipation ( 59% )- Please refer to module #... Loss of appetite ( 57% )- Please refer to module #... McCarthy et al.
- 13. Management General Approach to management of cognitive dysfunction Multidisciplinary Team
- 14. Non Pharm Management Cognitive Dysfunction Diminish quality of life Agitation Conflict of caregiver vs patient Non pharmacologically first Koopmans RT et al. Kverno KS et al.
- 15. Non Pharm Management Art Therapy Music Therapy Activity Therapy Aroma Therapy Douglas, S et al. Burns, A et al.
- 16. Non Pharm Management Cognitive Dysfunction SPECAL method-Three Golden Rules Don’t Ask Questions Listen to the expert Don’t Contradict Contented Dementia Trust
- 17. Non Pharm Management Cognitive Dysfunction Snoezelen approach Van Weert JC et al. multisensory stimulation
- 18. Pharmacology Treatment Cognitive Dysfunction Rule out medical causes Pharmacologic interventions concurrently Risperidone and olazapine Some antidepressants and neuroleptics Ballard C et al. Pollock BG et al. Lanctot KL et al.
- 19. Pharmacology Treatment Cholinesterase inhibitors ( eg. donepezil) Delays progression for about 6 mo Memantine for more advanced disease Mainstay for vascular dementia is risk reduction Burns A, et al. Roman G.
- 20. Pharmacology Treatment Pharmacologic treatment not curative Dementia is a progressive terminal illness Final stages similar for all dementia Mod to severe dementia (MMSE<18) survive > 4 yrs Corey-Bloom J et al. McKeith IG, et al. Larson EB et al.
- 22. Gazing into the Crystal Ball Encourage advanced care planning!
- 23. Challenging Decisions Study showed 40.7% with advanced dementia underwent at least one of following in last 3 months of life Hospitalizations ER visit Parenteral Therapy Feeding tube Mitchell SL, et al.
- 24. Challenging Decisions CPR Unless witnessed in-hospital arrest caused by V-fib; survival is 0.8% Chances of being discharged alive following arrest are almost nil Herlitz J, et al.
- 25. Challenging Decisions Feeding Knowledge versus emotion Does not improve survival or functional status Associated with post op complications Advocate for comfort feeding Sampson EL, et al. Finucane TE, et al.
- 26. Challenging Decisions Information to be provided to the resident and family should include: • Common causes of eating and swallowing • Technical considerations regarding placement and use of peg tubes • Principles of benefits of tube feeding • Considerations regarding future discontinuation of PEG tube. Data from Mitchell SL et al. Steps to Decision Making Include • Guiding residents and their families through what they have learned about PEG tubes • How to apply this knowledge to the resident's preferences, personal values and clinical situation • What is the residents' situation? • What would the resident want? • How is the decision affecting the family? • What questions need answering • Who should decide about the PEG tube placement? • When should the PEG be disbanded? • What is the resident’s or the family’s overall thoughts about the decision?
- 27. Challenging Decisions Hydration Differentiate dehydration and thirst Hydration doesn't improve symptoms associated with dehydration Risk of complications Start based on individual cases Jenkins CA et al. Viola RA et al.
- 28. Challenging Decisions Acute Care Hospitalizations Complications Transfer to acute care hospital for pneumonia might increase mortality Mitchell SL, Kiely DK et al. Thompson RS et al.
- 29. Challenging Decisions Acute Illness/Pneumonia No consensus No benefit from abx vs better short term survival with more aggressive abx therapy Lack of scientific evidence of this area Congedo M et al. Volicer L et al. Van Der Steen JT et al. Kruse RL et al.
- 30. Challenging Decisions Chronic Diseases Always Appropriate Analgesics Expectorant Parsons C et al. Antidiarrials Lubricating eye drops Antiemetic Pressure ulcer treatments Laxatives Anxiolytics Inhaled Bronchodila tors Antiepileptic
- 31. Challenging Decisions Chronic Diseases Sometimes Appropriate PPIs H2 Blockers Antihypertensive Thyroids Hormones AntiIschemic Parsons C et al. Antiemetic Diuretics Pressure ulcer treatments Digoxin AntiThyroid InhaledSteroids Hypoglycem ic Antipyschotics Antidepressants
- 32. Challenging Decisions Chronic Diseases Rarely Appropriate AntiAndrogens Parsons C et al. Bisphosphonates Minerals Heparin Vitamins Warfarin Appetite Stimulants Bladder Relaxants
- 33. Challenging Decisions Chronic Diseases Never Appropriate LipidLowering Medication Parsons C et al. Anti-platelets excluding aspirin Antiestrogens Sex Hormone Cytotoxic Chemotherapy Hormone Antagonist
- 34. Challenging Decisions Dementia Medications Recommended as long as clinic benefit Stopped in MMSE< 10 for Cholinesterase inhibitors; < 3 for Memantine 80% medical directors recommend stopping at hospice 30% accelerated cognitive and functional decline Shega et al. Sengstaken et al.
- 35. Understanding the Loss Developmental milestone of children Developmental regression of dementia
- 36. Reframing Loss
- 37. Summary Prevalence of Dementia is increasing internationally Management of advanced dementia involves a multidisciplinary team Advance care planning is critical Reframing dementia rather than battling dementia is vital
- 38. Work Cited US Census Bureau. International data base. Available at: www.census.gov/ipc/www/idb/groups.php. Accessed July 22, 2010. Statistics Division 2010, Social indicators, Indicators on health, United Nations, New York NY 10017 USA, viewed 5th May, 2011, <http://unstats.un.org/unsd/demographic/products/socind/health.htm>. US Census Bureau. Expectations of life at birth, 1970 to 2006, and projections,2010 to 2020. Available at: www.census.gov/compendia/statab/2010/tables/ 10s0102.pdf. Accessed July 22, 2010. O’Connor DW. Epidemiology. In: Burns A, O’Brien J, Ames D, editors. Dementia. 3rd edition. London: Edward Arnold; 2005. p. 16–23. Langa KM, Foster NL, Larson EB. Mixed dementia: emerging concepts and therapeutic implications. J Am Med Assoc 2004;292:2901–8. Burns A, O’Brien J, Auriacombe S, et al. Clinical practice with anti-dementia drugs: a consensus statement from British association for psychopharmacology. J Psychopharmacol 2006;20:732–55. Roman G. Therapeutic strategies for vascular dementia. In: Burns A, O’Brien J, Ames D, editors. Dementia. 3rd edition. London: Edward Arnold; 2005. p. 574–600. Corey-Bloom J, Fleisher AS. The natural history of Alzheimer’s disease. In: Burns A, O’Brien J, Ames D, editors. Dementia. 3rd edition. London: Edward Arnold; 2005. p. 376–86.
- 39. Work Cited McKeith IG, Ince P, Jaros EB, et al. What are the relations between Lewy body disease and AD J Neural Transm Suppl 1998;54:107–16. Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med 2009;361:1529–38. Larson EB, Shadlen MF, Wang L, et al. Survival after initial diagnosis of Alzheimer disease. Ann Intern Med 2004;140:501–9. Herlitz J, Eek M, Engdahl J, et al. Factors at resuscitation and outcome among patients suffering from out of hospital cardiac arrest in relation to age. Resuscitation 2003;58:309– 17. Mitchell SL, Kiely DK, Hamel MB. Dying with advanced dementia in the nursing home. Arch Intern Med 2004;164:321–6. Sampson EL, Candy B, Jones L. Enteral tube feeding for older people with advanced dementia. Cochrane Database Syst Rev 2009;2:CD007209. Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. J Am Med Assoc 1999;282:1365–70. Jenkins CA, Schulz M, Hanson J, et al. Demographic, symptom, and medication profiles of cancer patients seen by a palliative care consult team in a tertiary referral hospital. J Pain Symptom Manage 2000;19:174–84.
- 40. Work Cited Central Intelligence Agency 2011, The World Factbook, ISSN 1553-8133, Central Intelligence Agency, Washington, DC, viewed 5th May, 2011, <https://www.cia.gov/library/publications/the-world-factbook/fields/2102.html>. Viola RA, Wells GA, Peterson J. The effects of fluid status and fluid therapy on the dying: a systematic review. J Palliat Care 1997;13:41–52. Thompson RS, Hall NK, Szpiech M, et al. Treatments and outcomes of nursinghomeacquired pneumonia. J Am Board Fam Pract 1997;10:82–7. Congedo M, Causarano RI, Alberti F, et al. Ethical issues in end of life treatments for patients with dementia. Eur J Neurol 2010;17:774–9. Volicer L, Rheaume Y, Brown J, et al. Hospice approach to the treatment of patients with advanced dementia of the Alzheimer type. J Am Med Assoc 1986;256:2210–3. Van der Steen JT, Kruse RL, Ooms ME, et al. Treatment of nursing home residents with dementia and lower respiratory tract infection in the United States and The Netherlands: an ocean apart. J Am Geriatr Soc 2004;52:691–9. Van der Steen JT, Mehr DR, Kruse RL, et al. Treatment strategy and risk of functional decline and mortality after nursing-home acquired lower respiratory tract infection: two prospective studies in residents with dementia. Int J Geriatr Psychiatry 2007;22:1013–9.
- 41. Work Cited Shega JW, Ellner L, Lau DT, et al. Cholinesterase inhibitor and N-methyl-D-aspartic acid receptor antagonist use in older adults with end-stage dementia: a survey of hospice medical directors. J Palliat Med 2009;12:779–83. Sengstaken EA, King SA. The problems of pain and its detection among geriatric nursing home residents. J Am Geriatr Soc 1993;41:541–4. Morrison RS, Siu AL. A comparison of pain and its treatment in advanced dementia and cognitively intact patients with hip fracture. J Pain Symptom Manage 2000;19:240–8. Kverno KS, Black BS, Blass DM, et al. Neuropsychiatric symptom patterns in hospiceeligible nursing home residents with advanced dementia. J Am Med Dir Assoc 2008;9:509–15. Koopmans RT, van der Molen M, Raats M, et al. Neuropsychiatric symptoms and quality of life in patients in the final phase of dementia. Int J Geriatr Psychiatry 2009;24:25–32. Van Weert JC, van Dulmen AM, Spreeuwenberg PM, et al. Behavioral and mood effects of snoezelen integrated into 24-hour dementia care. J Am Geriatr Soc 2005;53:24–33. Ballard C, Waite J. The effectiveness of atypical antipsychotics for the treatment of aggression and psychosis in Alzheimer’s disease. Cochrane Database Syst Rev 2006;1:CD003476.
- 42. Work Cited Van der Steen JT, Mehr DR, Kruse RL, et al. Treatment strategy and risk of functional decline and mortality after nursing-home acquired lower respiratory tract infection: two prospective studies in residents with dementia. Int J Geriatr Psychiatry 2007;22:1013–9. Kruse RL, Mehr DR, van der Steen JT, et al. Antibiotic treatment and survival of nursing home patients with lower respiratory tract infection: a cross-national analysis. Ann Fam Med 2005;3:422–9. Pollock BG, Mulsant BH, Rosen J, et al. A double-blind comparison of citalopram and risperidone for the treatment of behavioral and psychotic symptoms associated with dementia. Am J Geriatr Psychiatry 2007;15:942–52. Lanctoˆ t KL, Herrmann N, van Reekum R, et al. Gender, aggression and serotonergic function are associated with response to sertraline for behavioral disturbances in Alzheimer’s disease. Int J Geriatr Psychiatry 2002;17:531–41. Ferri CP et al. Global prevalence of dementia: a Delphi consensus study. Lancet, 2005, 366 (9503): 2112–2117. Takeda et al. (2008), Mild cognitive impairment and subjective cognitive impairment. Psychogeriatric, 8: 155–160. doi: 10.1111/j.1479-8301.2008.00258 Kruse RL, Mehr DR, van der Steen JT, et al. Antibiotic treatment and survival of nursing home patients with lower respiratory tract infection: a cross-national analysis. Ann Fam Med 2005;3:422–9.
Notas del editor
- The purpose of this presentation is not to delve into the details of the pathophysiology of dementia and the specific type of medications used to treat it. No, rather the point of this talk is to understand how dementia is unique and important in our line of work and how we can help patient’s and their families navigate through the challenges of this disease. To do this, I will start by reviewing the the epidemiology of dementia, then discuss how the most common type of dementia present. We will then go into the general approach to management of patients with cognitive dysfunction as well as management of the secondary symptoms as a multidisciplinary team. We will then continue by navigating through the challenging decisions that patients and their families have to make and conclude by teaching how we can reframe hope.
- The aging of the population is a worldwide phenomenon. Between 1980 and 1998, the world's average life expectancy at birth rose from 61 to 67 years, with the most dramatic increases occurring in the low- and middle-income countries. As of 2011, the world life expectancy at birth is 67.07 years of age. More specifically in males it is 65.21 year and in females 69.05
- In the United States, for example, the proportion of the population older than 65 years is expected to increasefrom 12.6% in 2010 to 19.3% in 2030, whereas the proportion older than 80 years is expected to increase from 3.7% to 5.1% in the same period.Life expectancy is currently (75.1 years for men and 80.2 years for women), and is expected to increase to79.5 years by 2020
- Although dementia is not exclusive to thegeriatric population, its prevalence increases exponentially with age, going from only 1% at 60 years old to more than 20% at 85 years and older. With the aging of the population, the number of patients with dementia is expected to keep rising.In 2005, Alzheimer’s Disease International (ADI) commissioned a panel of experts to review all available epidemiological data and reach a consensus estimate of prevalence in each of 14 world regions. The panel estimated 24.3 million people age 60 years and over with dementia in 2001, 60% living in Low and middle income countries. Each year, 4.6 million new cases were predicted, with numbers affected nearly doubling every 20 years to reach 81.1 million by 2030.
- Dementia is an acquired syndrome characterized by a significant deterioration in an individual’s usual cognitive abilities, which provokes a functional decline severe enough to interfere with his everyday life.We are palliative care givers. We are in the business of improving of quality of life patients and their families. With this growing demographic of patients, understanding this disease and how we can use the palliative approach to provide better for these patients is extremely relevant.
- There are many medical and neurologic conditions that can manifest as a dementia syndrome. The most frequent causes in the geriatric population are Alzheimer disease, accounting for about 60% of all cases, followed by vascular dementia and dementiawith Lewy bodies. Mixed dementia, usually defined as the coexistence of Alzheimer disease and vascular dementia, is also recognized as a major cause of cognitiveimpairment in older patients
- Memory Impairment: Early impairment of episodic memory, later impairment of sematic memoryMain features: Language impairment, progression to mutisim, disorientation; visiospatial and object manipulation difficulties, impaired object recognition Executive dysfunctionNeuropsychiatric symptoms: Present in moderate to advanced diseaseNeurologic signs: May be present in later stages: opposition, rigidity, paratonias, parkinsonism, myoclonus, tonic clonic seizures
- Memory Impairment: caused by difficulties in retrieving stored information; more dramatically/rapidly seen than in Alzheimer Main features: Psychomotor slowing; inattention; Dysexcutive syndromeNeuropsychiatric symptoms: Frequent. Depression; apathy, emotional liabilityNeurologic Signs: Soft or subtle: magnetic gait, loss of postural reflexes, urinary incontinence
- Memory Impairment: Episodic memory impairment less present in early stages, becomes evident as disease progressMain Features: One year rule: less than 1 year between onset of parkinsonism and dementia (vs dementia related to Parkinson disease, which occurs in late stages). Might progress more rapidly than Alzheimer disease. Early executive and visuo-perceptutal impairment. Fluctuations in attention, cognition or alertness.Neuropsychiatric Symptoms: Detailed and recurrent visual hallucinations REM sleep behavior disorder Neurologic signs: Spontaneous parkinsonism Autonomic dysfunction early in disease with postural hypotension that can cause syncope and falls. Less than 50% of patients with DLB present a severe neuroleptic sensitivity, presenting as a sudden exacerbation of parkinsonism, impaired consciousness, or a neuroleptic malignant syndrome. This reaction is seen both with typical or atypical antipsychotics, and it can be immediate or seen within the first weeks of either first exposure or dose increase. Carefulconsideration before prescribing this type of medication is therefore warranted.
- Another way of approaching Dementia especially to make it more relatable to our patients and their family is to think of our experiences in life is recorded as a photograph and stored in our album. With this theory, each photograph has two features: Facts and associated feelings. Photographs are stored in our album a split second after each experience, and this storage requires no effort from us whatsoever. Initially, Dementia introduces an entirely new type of photograph: a photograph in which the facts of what has just occurred are not stored, although the feelings associated with the missing facts are stored.Eventually, feelings become very much more important than facts for the person with dementia. They will turn back to much olderpages in their album, trying to make the most useful match they can between what is happening to them in the present - in the here and now – and other photographs from long ago, before dementia started to disrupt their life.
- In a retrospective survey of care givers in England, McCarthy et al(1997) reported a host of secondary symptomsand signs experienced by people with dementia in the last year of life: urinary incontinence (72%), pain (64%), low mood (61%), constipation (59%) and loss of appetite (57%).Please refer to the following modules for detailed information on how to manage these secondary symptoms. I would like to use this talk to spend time the symptom that is the hallmark of this disease. Cognitive dysfunction.
- The symptoms related to cognitive dysfunction provide the most problems not only for the person with dementia and the care givers, but also in relation to clinical management. The most obvious related symptoms are agitation, aggression, mood disorders and psychosis, but other important symptoms include sexual disinhibition, eating problems and abnormal vocalisations. It takes the whole team to properly address these issues. Every member of the team has a critical role to play in helping to provide the best care for these patients and managing these symptoms.
- Agitation, manifested by repetitive mannerisms and vocalizations or physical aggressiveness, seems to beassociated mostly with restiveness to care. This behavior happens during interaction between the severely demented person and a family member or caregiver, and is caused by a lack of understanding.The patient normally wants to just wander, they have this restless about them, and the caregiver wants them to just sit still. This conflict, and insensitiveness on the part of the caregiver leads to aggressive behavior on the part of the patient because they don’t understand the need to be still.This behavior should first be managed with non pharmacologic and environmental approaches, using a gentle approach and adapting to the patient’s routine or pattern.
- Art therapy:Activities such as drawing and painting are thought to provide individuals with the opportunity for self-expression and the chance to exercise some choice in terms of the colors and themes of their creations.Music Therapy: The therapy may involve engagement in a musical activity (e.g. singing or playing an instrument), or merely listening to songs or music. It has been shown that music therapy increases the levels of well-being, better social interaction and improvesautobiographical memory in a group of nursing home residents who regularly had music played to them.Activity Therapy: Activity therapy involves a rather amorphous group of recreations such as dance, sport and drama. It has been shown that physical exercise can have a number of health benefits for people with dementia, for example reducing the number of falls and improving mental health and sleep.Aromatherapy:Aromatherapy is one of the fastest growing of all the complementary therapies. It appears to have several advantages over the pharmacological treatments widely used for dementia. It has a positive image and its use aids interaction while providing a sensory experience. It also seems to be well tolerated in comparison with neuroleptic or sedative medication. The two main essential oils used in aromatherapy for dementia are extracted from lavender and melissa balm. They also have the advantage that there are several routes of administration such as inhalation, bathing, massage and topical application in a cream. This means that the therapy can be targeted at individuals with different behaviors: inhalation may be more effective than massage for a person with restlessness, for instance.
- The SPECAL Method which stands for Specialized Early Care for Alzheimer’s focus on three simple rules to help increase the person’s confidence, slow the rate of deterioration and reduce the need the medication. It is the hope that by implementing the following three simple rules, one would enable the person to remain in their own home for longer and minimize the distress during and after a transition into a different care setting. Don’t ask questions-Avoid asking any direct question that requires the person with dementia to search their photograph album for factual information that may not have been stored. Their desperate search for missing facts will only increase their perception of their own disability, causing them unnecessary distress. It is surprising how much information you can gather from the person with dementia without asking directquestions.Listen to the expert- Listen to the questions the person with dementia is asking, and consider very carefully what the best answer might be for them. For people with dementia, feelings are more important than facts, and the information that is given to them from now on must generate good feelings for them. There is a moral imperative not to cause them any more anxiety than they are already experiencing. Once you have found the best answer to a question, it should be used consistently by everyone coming into contact with the person. Then move on to the next most frequent question. Using this method may help reduce the anxious questioning gradually subsides.Don’t Contradict-Do not argue with the person with dementia. They are increasingly likely to seek out old photographs from their pre-dementia past, in order to understand what is happening in thepresent. We need to take careful note of the person’s language when they do this, so that we can adapt to them, rather than expecting them to follow our lead.
- Snoezelen, an approach using controlled multisensory stimulation (lighting effects, color, sounds, music, scents) has been shown to reduce agitated and withdrawn behavior in patients with Alzheimer disease during treatment sessions, but without evidence of longer-term benefits.
- In cases of end-stage behavioral disturbances or symptoms of cognitive dysfunction that are not related to restiveness to care, an underlying physical or medical cause should always be investigated.These causes include symptoms of pain, thirst, hunger, sleep difficulties, constipation, sensory deprivation or overstimulation, social withdrawal, discomfort caused bybad position, or an or infection (eg, pneumonia). Physicians must also exclude the adverse effects of delirium or medications.The only time the evidence shows to use pharmacologic interventions concurrently with non pharmacology approaches is in the presence of severe depression, psychosis or aggression that puts the patient or others at risk of harm. First-step agents for severe agitation, aggression, and psychosis are risperidone and olanzapine. The potential benefit of all antipsychotics must be weighed against the potential risks, eg (extrapyramidal symptoms)Alternatives to antipsychotic medications are memantine,citalopram, sertraline, trazodone,andcarbamazepine, which have shown some benefits in the treatment of psychosis, agitation, and aggressionassociated with dementia.However, medication should never be an alternative to an insufficient ratio of personnel, staff education about non pharmacological approaches.
- Pharmacologic treatments of Alzheimer and Lewy body dementia mostly consist of cholinesterase inhibitors (donepezil, rivastigmine, galantamine), which can slow the deterioration of the cognition in patients with mild to moderate dementia, delaying progression for approximately 6 months when effective.Memantine, an antagonist of the N-methyl-D-aspartate (NMDA) receptor, sometimes reduces symptoms in patients with more advanced disease.Although cholinesterase inhibitors and memantine have also been reported to delay the progression of vascular dementia, mainstay of therapy is prevention of vascular disease by reducing risk factors.
- Because pharmacologic treatment is not curative but simply delays the progression, dementia is now recognized as a progressive terminal illness.And although the type of dementia is important to predict its clinical course and select the appropriate pharmacologic treatment, the final stages, which are mostly of interest for palliative care, are similar for all types of dementia. Most epidemiologic studies have reported a median length of survival of approximately 6 years after diagnosis for patients with Alzheimer disease, possibly slightly less and more variable for Lewy body disease, and of 41 to 60 months for vascular dementia.
- This table allows one to look at the progression of dementia in relation to the prognostic indicators such as the Clinical Dementia Rating Scale and FAST. The CDR breaks down the span between the healthy brain to severe dementia into five stages: 0, normal healthy; 1, mild dementia; 2, moderate dementia; and 3, for severe dementia. Between Stages 0 and 1 on the CDR is the Stage 0.5, ‘questionable dementia’, which is described as mild memory loss with intact orientation, full achievement on the activities of daily living (ADL), with slight impairment in social activity but fully independent activity in daily life. Individuals in CDR Stage 0.5 show only slight forgetfulness, partial memory loss, with little impairment in time recognition and full recognition in space and person.It has been said that the point of death is usually between a MMSE score of 5 and 0.
- With these two similar ways of viewing dementia, what is the best way to care for these patients? As with all progressive and noncurable illnesses, advanced care planning should be encouraged for all patients with dementia, and should start when the diagnosis is made, to facilitate decision making at the end of life. Because most patients withadvanced dementia as their photographs go missing or fade away are no longer able to express wishes and preferences for level of care, the presence of a living will should be sought.We might be able to gaze into the crystal ball and help families and their loved one plan ahead.
- The difficult decisions we are often called upon to help the families make. In a recent prospective study, 40.7% of nursing home residents with advanced dementia underwent at least 1 burdensome intervention (hospitalization, emergency room visit, parenteral therapy, tube feeding) in their last 3 months of life.22 Patientswhose proxies had a better understanding of the poor prognosis of advanced dementia were less likely to undergo such an intervention.
- The likelihood of a successful cardiopulmonary resuscitation in an older patient is extremely low (0.8%), except for specific cases such as a witnessed in-hospital arrest caused by ventricular fibrillation.In a patient with advanced dementia, the chances of being discharged alive from the hospital following a cardiopulmonary arrest are almost nil. In the rare cases that it might happen, the experience would surely be traumatic for the patient and family, associated with unnecessary pain and suffering, andleaving the patient with additional disabilities.
- Feeding always becomes a difficult problem in patients with severe dementia, for several reasons. They often develop dysphagia, leading to poor oral intake, malnutrition,and weight loss. Patients also sometimes refuse to open their mouth and to eat.Even though we know that decreased oral intake might be partly related to a lower basal metabolic rate and decreased caloric needs, many family members and health care professionals have difficulties leaving a patient without nutrition, which often triggers the placement of a feeding tube. Several studies have shown that tube feeding does not preventmalnutrition or pressure sores, and does not improve survival or functional status.PEG tube placement can also be associated with postoperative complications (in 32%–70% of cases) and discomfort, either from the procedure, the presence of the tube, or the need for restraints to prevent patients from pulling the tube out.To alleviate the families members fear of abandonment of the patient or the patient suffering or being hungry, advocate for comfort feeding rather than placement of feeding tube. Using hand feeding when the patient agrees to open his/her mouth and shows no signs of distress aiming to maximize comfort rather than oral intake.
- Here is a guideline that families can be used for families.
- The decision to use or withhold parenteral hydration in patients who are unable to maintain adequate oral hydration is as challenging as the decision on feeding tubes.When making this decision, one should be aware of the difference between dehydration and thirst. Dehydration refers to the loss of normal body water and manifests itself by things like dry skin and mucous membranes, thickened secretions, decreased urine output, postural hypotension, irritability, headaches, drowsiness, constipation, weight loss, and disorientation.Thirst is a symptom that usually does not respond to medical treatments, and is best treated by small amounts of fluid or ice chips, and keeping the resident’s mouth and lips moist.There is currently no evidence that parenteral hydration can improve comfort or reduce symptoms associated with dehydration, such as pressure sores or constipation, in patients with end-stage cancer.39,40 To our knowledge, there hasbeen no study of parenteral hydration in patients with advanced dementia.Parenteral hydration, whether it is intravenous or subcutaneous, is associated with a risk of complications such as cellulitis at the site of catheter insertion, discomfort from catheter placement and presence, fluid overload.Because of the lack of evidence for benefits of parenteral hydration, the decision on its use should be individualized and based on the patient’s or family’s wishes, as well as unique circumstances.For example, temporary hydration might be appropriate in the event of an acute illness such as diarrhea, vomiting, or infection. When decreased hydration is caused by patient’s decreased oral intake, oral hydration can often be increased by using simple interventions and frequently encouraging the patient to drink small amounts of fluids when possible.
- Admission to an acute care hospital or an emergency room can be detrimental to older patients, and even more so if demented. They are more likely to suffer from complications like delirium, falls, decreased oral intake, nosocomial infections.One study even showed that rather than improving survival, transfer from a nursing home to an acute care hospital for the treatment of a pneumonia might increase the risk ofmortality and functional deterioration in patients with advanced dementia.For these reasons, risks and benefits shouldalways be weighed when considering admitting a patient with advanced dementia to an acute care hospital, either from the community or a nursing home. The decision should be made in collaboration with a well-informed surrogate decision maker
- Before one decides to treat an acute illness such as cardiac events, pulmonary embolisms or infections, you once again want to look at the expected benefits, risks, and discomfort and their overall goals of care.Pneumonia is particularly challenging because of its high prevalence in patients with dementia due to the high incidence of dysphagia in this population and it might be responsible for up to 40% of deaths. Though there is no consensus on the appropriateness of treating pneumonia in a patient with advanced dementia, some studies suggest that antibiotics do not improve survival or comfort. Other do show however, better short term survival in patients with more aggressive antibiotic therapy.There is a clear lack of scientific evidence in thisarea. The decision to treat or not to treat a pneumonia in a patient with advanced dementia should therefore be based on clinical judgment, which has been shown to be adequate in a high proportion of case.s
- Because of limited life expectancy and consequent low long term benefits of some therapy, such as treatment of dyslipidemia or osteoporosis; treatment of some chronic diseases might not be appropriate.Even knowing this, we as medical care takers have difficulty stopping some of these medications because of the lack of scientific evidence supporting one option or the other.These next two slides are a recommendations from a modified Delphi consensus panel.
- Because of limited life expectancy and consequent low long term benefits of some therapy, such as treatment of dyslipidemia or osteoporosis; treatment of some chronic diseases might not be appropriate.Even knowing this, we as medical care takers have difficulty stopping some of these medications because of the lack of scientific evidence supporting one option or the other.These next two slides are a recommendations from a modified Delphi consensus panel.
- Because of limited life expectancy and consequent low long term benefits of some therapy, such as treatment of dyslipidemia or osteoporosis; treatment of some chronic diseases might not be appropriate.Even knowing this, we as medical care takers have difficulty stopping some of these medications because of the lack of scientific evidence supporting one option or the other.These next two slides are a recommendations from a modified Delphi consensus panel.
- Because of limited life expectancy and consequent low long term benefits of some therapy, such as treatment of dyslipidemia or osteoporosis; treatment of some chronic diseases might not be appropriate.Even knowing this, we as medical care takers have difficulty stopping some of these medications because of the lack of scientific evidence supporting one option or the other.These next two slides are a recommendations from a modified Delphi consensus panel.
- We have already talked about the specific medications used to treat the various causes of dementia, and we are aware of their side effects. So, when do we stop them?In a recently published survey, 80% of hospice medical directors surveyed recommend discontinuing cholinesterase inhibitors and memantine at the time of hospice enrolment.However, approximately 30% have observed accelerated cognitive and functional decline or emergence of challenging behaviors with medication discontinuation. Family members are also frequently reluctant to discontinue these medications.
- When we first enter the world, we are bald, have no motor control, and cannot speak. Nonetheless, we are instantly loved and cared for. Those around us learn to adapt to the fact that we have limited ability to express ourselves and need constant care. They adapt to their schedule and wake up every two hours to feed us. As babies grow, each milestone they gain brings new excitement and joy as we watch them develop. There is a certain joy that comes with watching a baby gain a new photograph to add to their album. With dementia, we tend to grief the loss of these missing photographs and our loved one’s regression. We tend to become frustrated and disheartened when we are faced daily with with the loss of the person we once knew.
- We need to reframe dementia in such a way that focuses on the person we see before us. Dementia actually gives us a snap shot back to when we were first born. Their end stage is similar to the way we all started; bald, no motor skills and an inability to express ourselves. We need to cherish them as they are, and meet them where they are. Part of our skills set as palliative care and hospice caregivers is to help families reframe dementia in this way. To help family members see their loved one as a new light and to help them enjoy them as they are.