Does my mother/father have dementia? Linda Lee, MD, MCl(Sc),CCFP, FCFP November 2013

Transcription

1 Does my mother/father have dementia? Linda Lee, MD, MCl(Sc),CCFP, FCFP November 2013

2 Questions Does my mother/father have dementia? Should he/she be referred to a specialist? What are my chances of getting this? and What can I do to reduce my risk? What help is available for us? Can my mother/father still make decisions?

3 Objectives 1. Differentiate between normal cognitive aging, mild cognitive impairment (MCI), and dementia 2. Outline risk factors and symptoms that increase the likelihood of an underlying cognitive disorder 3. Describe clinical features of common types of dementia, and which cases require referral to specialists 4. Discuss sensitive disclosure of a diagnosis of dementia 5. Review genetics and Alzheimer s Disease and lifestyle interventions that may have a protective role 6. Describe resources and supports for family 7. Review capacity issues

4 Does my mother/father have dementia? Is he/she at high risk of having unrecognized cognitive impairment? Is it normal, Mild Cognitive Impairment (MCI), or Dementia? Use a structured approach!

5 Is he/she at high risk of having unrecognized cognitive impairment? Elderly patient with at-fault MVA History of delirium Post stroke First depression after age 60 Family concerns Patient concerns

6 Is it normal, Mild Cognitive Impairment (MCI), or Dementia? No objective cognitive loss Cognitive loss with NO impairment of ADLs Cognitive loss with impairment of ADLs

7 Activities of Daily Living INSTRUMENTAL ADL s Manage medications Handle money, bills, shop Use telephone Prepare food BASIC ADL s Bathe/shower Walk Toilet Transfer (bed/chair) Feed self

8 Functional Activities Questionnaire

9 Normal Aging Subjective complaints, no family concerns, no objective findings of memory loss Commonly forget proper nouns Decreased rate of new learning Should recall with cues

10 Mild Cognitive Impairment (MCI) Prevalence of MCI over age 65: 16.8% Annual conversion rate: 5-10%/year in community populations, 10-15%/year in specialty clinic populations 25%-30% will not progress, some may improve (?misdiagnosis) Chertkow H, et. al. Mild cognitive impairment and cognitive impairment, no dementia, Part A. Alzheimer s & Dementa 2007 Petersen R. Mild Cognitive Impairment. NEJM 2011

11 Montreal Cognitive Assessment (MoCA) vs. MMSE MMSE < 26 detects 18% of MCI 78% of mild AD Specificity 100% MoCA < 26 detects 90% of MCI 100% of mild AD Specificity 87% Nasreddine Z et al, J Am Geriatr Soc 2005;53

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13 In persons with MCI or dementia, reduce or avoid use of: Anticholinergics o Bladder stabilizers o Antihistamines o Tricyclic antidepressants Benzodiazepines Narcotic analgesics

14 Use a structured approach to patients with memory difficulties

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16 Should my mother/father be referred to a specialist?

17 Frontotemporal Dementia (FTD) Progressive changes in behavior or personality, or progressive decline in language or praxis (early decline in regulation of personal and social interpersonal conduct, early emotional blunting and loss of insight) Early onset: ( mean age 50; range 21-85) Early loss of executive function Family history in 20 40%

18 Lewy Body Dementia (DLB) Features: (i) Parkinsonism features / bradykinesia (ii) fluctuating cognition (iii) visual hallucinations Presence of 1 of 3 = possible DLB, 2 of 3 = probable DLB Visuospatial and executive dysfunction > memory loss May have REM sleep behaviour disorder, urinary incontinence, postural hypotension

19 Alzheimer s Disease Initial short term memory loss language + visuospatial dysfunction behavioral symptoms 5% early onset (<age 60); 95% late onset (>age 65)

20 Vascular Dementia (VaD) Vascular risk factors, HT Executive dysfunction > memory loss Imaging must show evidence of ischemic changes

21 Mixed (AD/CVD) Alzheimer s/vascular Dementia Must have vascular risk factors Clinical progression may or may not be as expected for AD Imaging may or may not show ischemic changes

22 Patients to refer to specialists Frontotemporal dementia Lewy Body Dementia / Parkinson s disease dementia Young patients with memory loss (onset < age 65) Rapidly progressive symptoms (dementia with onset of first symptoms within 12 months) Atypical presentation

23 Third Canadian Consensus Conference on the Diagnosis and Treatment of Dementia, 2006 The issue is not one of whether to disclose the diagnosis of dementia or not but rather how and when to do so. Disclosure should take a patient-centered approach that maintains the personal integrity of the individual and instills a sense of hope. Fisk JD, et al. Disclosure of the diagnosis of dementia. Alzheimer s & Dementia 2007;3

24 Does my mother/father have dementia? Do I have Alzheimer s Disease? Find out why the person is asking Be very careful about giving a specific diagnosis and time frame Acknowledge uncertainty and limitations of current diagnostic tests Reassure where possible Address the family members Offer realistic hope Robert Pope Breaking Bad News Page 24

25 Further reading

26 What are my chances of getting this? and What can I do to reduce my risk?

27 Genetic testing for Alzheimer s Disease Average lifetime risk of developing AD is 10-12% 75% of cases are sporadic 15-25% of cases have familial clustering 5% are autosomal dominant forms

28 Genetic testing for Alzheimer s Disease Early Onset AD: <60 (5%) 47% familial clustering 40% sporadic All autosomal dominant forms are early onset 3 deterministic genes: PSEN1, PSEN2, and APP PSEN1 and APP have complete penetrance; PSEN2 has 95% penetrance Age of onset can vary 20 years in the same family 1 susceptibility gene: APOE e4 Late onset AD: >65 (95%) 15-25% familial clustering >75% sporadic 1 first degree relative risk doubles = 25% life time risk 1 susceptibility gene: APOE e4 APOE e4 heterozygoes have 2-3 fold increase in risk, homozygotes have 2-10 fold increase in risk; may influence age at which AD occurs rather than overall risk

29 Genetic testing for Alzheimer s Disease For families in which an autosomal dominant Alzheimer s Disease gene mutation is a possibility, testing should be offered in: Symptomatic early-onset AD with FHx of dementia (or unknown FHx) Autosomal dominant FHx with one or more cases of early-onset AD Relative with a mutation consistent with early-onset AD (PSEN1/2 or APP) Multidisciplinary approach required for informed decision-making Counseling should be provided in the presence of the individual s legal guardian or family member APOE genetic testing is not recommended due to limited clinical utility and poor predictive value Direct-to-consumer testing is not recommended Goldman JS, et al. Genetic counseling and testing for Alzheimer disease: Joint practice guidelines of the American College of Medical Genetics and the National Society of Genetic Counselors. Genetics in Medicine 2011

30 There is evidence for benefit of Mediterranean diet increased exercise cognitive training (limited) increased social engagement

31 What help is available for us?

32 Elder Abuse In a 2010 US study of 129 adults with dementia, mistreatment by the caregiver was detected in 47.3%: 88.5% psychological abuse, 19.7% physical abuse, 29.5% neglect close to half of people with dementia being cared for by a family member at home experience some form of mistreatment Observe if a care recipient seems fearful of the caregiver caregiver shows signs of anxiety or depression caregiver mention difficult, particularly aggressive, behaviours. Wiglesworth A, et al. Screening for abuse and neglect of people with dementia. J Am Geriatr Soc 2010 Mosqueda L, Dong X. Elder abuse and self-neglect. JAMA 2011

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34 Elder Abuse For suspected elder abuse, contact CCAC for guidance Advocacy Centre for the Elderly is funded by Legal Aid Ontario to provide legal services to low income seniors Reporting elder abuse to MOHLTC is mandatory if abuse is suspected in long term care facilities

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36 Can my mother/father still make decisions?

37 Capacity a clinical opinion Capacity is the ability to understand information relevant to a treatment decision and to appreciate the reasonably forseeable consequences of a decision or lack of decision. Etchells E, et al. Bioethics for clinicians: 3. Capacity. CMAJ 1999 cognitive testing alone does not determine capacity capacity testing is restricted to the domains of: finances, health care, nutrition, shelter, clothing, hygiene, safety

38 Some capacity domains require assessments of both functional and cognitive components: Cognitive Functional Treatment Alternate Level Property Decisions of Care Decisions Decisions HEALTH PRACTITIONER HEALTH PRACTITIONER CAPACITY ASSESSOR The importance of functional and cognitive components may vary depending on context Allied Health Care Professionals can assist in gathering corroborative information

39 Capacity for Health Care Decisions 1. Is aware of the choices - ask what they have just heard, and ask again later for stability of response 2. Understands information relevant to the choices - ask the patient to paraphrase his/her understanding of the intervention (needs to be able to remember the general information given regarding the proposed treatment) 3. Appreciates the foreseeable consequences of the choice after weighing relative benefits and disadvantages - assess the patient s ability to weigh each benefit and risk against personal values and choices, whether he or she understands the implications and is willing to live with the consequences of the decision - Source: Health Care Consent Act section 4(1)

40 Aid to Capacity Evaluation (ACE) University of Toronto Joint Centre for Bioethics

41 Capacity for Decisions on Alternative Levels of Care Include functional and cognitive domains: Functional: the ability to perform IADLs and BADLs as measured objectively, eg. OT home visits Cognitive: Does the person understand his/her condition or problem? What problems are you having right now? Can you think of any other ways of looking after your condition/problem? Does the person appreciate the foreseeable consequences of admission or not? How do you think admission to a nursing home or home for the aged could help you with your condition/problem? What could happen to you if you choose not to live in a nursing home or home for the aged? What could happen to you if you choose to live in a nursing home or home for the aged? Source: CCAC 2007

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43 Source: Cole J, Dawe N. Assessing Capacity for Admission to Long-Term Care Homes Substitute Decision Maker (SDM) 1. Guardian of the person 2. Power of Attorney for Personal Care 3. Representative appointed by the Consent and Capacity Board 4. Spouse/partner 5. Child/Parent 6. Parent with only right of access 7. Sibling 8. Any other relative (related by blood, marriage, adoption) Attorney General s website: ffice.asp

44 Advance Directives Proxy directives specifies who should make decisions regarding property, health, or personal care when the person is no longer able to make those decisions (grants Power of Attorney) Legal and valid only when completed voluntarily by a competent person Encourage discussion about Power of Attorney for Personal Care and Property in all patients with early dementia Obtain necessary forms from the person s bank

45 Power of Attorney Two types: Personal care - health care, shelter, nutrition, clothing, hygiene, safety Property managing income, spending, assets, debts A legal opinion is not usually necessary unless the requirements of the case are more complex

46 Canadian Medical Protective Association Almost no cases have involved physicians making capacity assessments for decisions of health care, alternate levels of care, or personal care I am of the opinion that this patient lacks the capacity to make shelter [safety] decisions is appropriate phrasing Ensure you have adequate documentation to justify that your opinion is a reasonable one