2009 Irene D. Turpie

Transcription

1 2009 Irene D. Turpie

2 Discussion Main types of dementia When to suspect How the diagnosis is confirmed Management Irene Turpie

3 How Big is the Problem? Canada and World wide Prevalence and Incidence 2006:97,000 new cases every year in Canada 300,000 people with Alzheimers disease in Canada 36% of Canadians know someone with Alzheimers disease 24 million world wide Likely 35 million 2010 and doubling every 20 years Not only in Western Countries Incidence and prevalence increasing with Increasing Life Expectancy Irene Turpie

4 Types of Dementia (brain failure) Is there a better word Mild Cognitive impairment Alzheimer's disease Lewy Body Dementia Vascular Cognitive Impairment ( vascular dementia Mixed dementia Fronto temporal dementia Irene Turpie 2009 Oct 4

5 Warning Signs Memory loss for recent happenings Apathy. Loss of energy Depression? Asking the same question repeatedly Losing bags, keys, jewellery and being convinced someone has taken them Difficulty with daily tasks such as cooking, managing simple tools such as the remote control of the television set Difficulty in finding the right word in conversations Disorientation in time and place Change in mood Change in insight and judgment Problems with money management Irene Turpie

6 Dementia / Alzheimer s Disease Short term memory is the first to be affected Memory loss early sign + one of the following 1. impaired ability to learn new information. 2. Decline of language.difficulty finding the right words 3. Deterioration in visuospatial skills Correlating what you see with what you do Drawing a clock 4. Insight and judgment affected 5. Apathy and foresight 6. calculation, abstraction also affected 7. No other diseases present 8. Affects every day life Irene Turpie

7 Nerve to nerve Transmission Irene Turpie

8 Mild Cognitive Impairment (MCI) Long preclinical Phase for AD Doctor I think my memory is going Older adults with subjective memory complaints and abnormalities on testing have a higher risk of AD 12 40% will go on to develop a dementia Usually much more significant if a family member says I think his memory is going and the patient is unaware and doesn t know what all the fuss is about Irene Turpie

9 Types of Dementia Alzheimers disease Lewy Body Disease and dementia associated with Parkinsons disease Vascular Cognitive Impairment related to stroke Fronto temporal dementia, Picks disease Irene Turpie

10 Risk factors for dementia Apolipoprotein E Σ4 Less Education Hypertension Hyperlipidemia Genetic associations ( very rare except trisomy 21) Presenilin gene Irene Turpie

11 Course of Alzheimer's disease Irene Turpie

12 Investigations Blood tests to look for abnormalities of the blood, kidneys, heart liver, thyroid, blood sugar, calcium Tests of memory and understanding Irene Turpie

13 CT SCAN IN Alzheimers disease Alzheimers disease Normal CT scan Irene Turpie

14 Functions of the frontal lobe of the brain Executive function includes an ability to think abstractly To plan, initiate, sequence, monitor and stop complex behaviour Irene Turpie

15 Frontotemporal Lobe Degeneration Younger patients Insidious onset of social/interpersonal conduct Impairment of regulation of personal conduct Emotional Blunting Loss of Insight Memory tests often normal at the beginning Hyperorality Preference for certain foods Hyper sexuality and sexual disinhibition Perseverative behaviour Disinhibition, inattention, social withdrawal 1. Apathy Irene Turpie

16 Lewy Body Dementia Looks like Parkinsons disease LBD clinically 15 25% of all dementia but autopsy evidence is less Intermittent symptomatology of cognitive symptoms Hallucinations Sleep disturbances Paranoid delusions in 50% of patients Falls, syncope Sensitivity to Neuroleptic drugs that are sometimes used for behaviour problems Rivostigmine Irene Turpie

17 Vascular cognitive Impairment Association with Stroke and Hypertension, atrial fibrillation ( Healthy HEART and a Healthy Brain) Increasing association of Heart disease and Dementia Correlations between brain changes and cognitive dysfunction Relationship between cerebro vascular disease and Alzheimers ( Mixed dementia ) Most common from of dementia after 85 Apathy, depression and loss of awareness symptoms most frequently identified by family Not always memory Irene Turpie

18 Medications available in Canada for Alzheimers disease 1. Remenyl or galantamine 2. Aricept or Donepezil 3. Rivostigmine or Exelon 4. Memantine or EBIXA Irene Turpie

19 Cholinesterase Inhibitors in Alzheimers disease 40 50% of patients will respond and show improvement Family report often the most helpful The benefit is equivalent to keeping patients 6 12 months behind where they would be without Modest Improvement cognition, ADL and global outcome measures Likely improve behaviour and apathy Most doctors will suggest that we discontinue gradually when no longer having an effect. Irene Turpie

20 Side effects of cholinesterase inhibitors Gastrointestinal side effects, nausea, vomiting, diarrhoea, weight loss Sweating, runny nose Slow heart beat Headache Nightmares Urinary frequency Irene Turpie

21 Ebixa (memantine) Ebixa works by a different route For patients with severe dementia Still not covered by ODB. ( $5 /day ) Fewer side effects Irene Turpie

22 New Medications ( or many) Medications Alcohol Benzodiazepines Muscle relaxants Sedating antidepressants and antihistamines Gravol Analgesics And Symptoms of Dementia 22 12/21/2009 IDT

23 Management Alzheimer's Disease Accurate diagnosis Patient and Caregiver Education Appropriate Powers of Attorney appointed and in place Advanced directives or some discussion of future treatment options Trial of cholinesterase inhibitor with three month reassessment Assess Driving Irene Turpie

24 Behavioural Symptoms Symptom Aggression Disinhibition Hallucinations Anxiety Apathy Sleep /wake disturbances Treatment Aromatherapy Bright light Day Programs Stable environments Reassurance Medication Respite care for the caregiver Irene Turpie

25 Best drug for behaviour symptoms Irene Turpie

26 Medication Prescribed for Behavioural Problems Haloperidol Haldol Less sedation Risperidone Risperdal Slight increase in stroke Olanzepine Zyprexa Slight increase in stroke Weight gain Blood sugar increase Less sedation Sedation Quetiapine Seraquil Sedation Stiffness Difficulty in WALKING Stiffness Not always effective and non drug methods can work just as well or better Small increased risk of stroke and mortality Irene Turpie

27 Delirium occurs in all types of dementia Drowsiness or Excessive agitation accompanied by a change in cognition which is not accounted for by a pre existing or evolving dementia Caused by intercurrent illness, condition, new drug or new environment Common in hospitalized patients Commonest underlying risk factor is an undiagnosed dementia Treatment does not shorten the course of an established delirium Delirium can be prevented HELP programs Irene Turpie

28 Older Drivers 28 12/21/2009 IDT

29 Driving Irene Turpie

30 What can a family do? Learn more about the condition. Family education one of the most important interventions Support the caregiver who is often reluctant to talk about the situation. keep it from the family Patience, reassurance Irene Turpie

31 Responsive Behaviours in Dementia

32 What is Dementia? Dementia is a set of symptoms, which includes loss of memory, understanding, and judgement

33 Dementia Alzheimer s Disease Frontal- Temporal Dementia Lewy Body Disease Vascular Dementia Mixed Dementia

34 All Behaviour Has Meaning Result of a disease process Try not to take behaviour personally Look for person behind the disease Build on strengths Focus on the positive

35 Changing Behaviour You cannot expect a person with dementia to change You can influence another person s behaviour You can control your own behaviour

36 Responsive Behaviours occur in response to something that is going on around the person

37 Responsive Behaviours Agitation Aggression Hallucinations and delusions Inappropriate behaviour Repetition

38 Responsive Behaviours Rummaging, hoarding and hiding Restlessness Suspicion and paranoia Wandering Catastrophic reaction

39 Responsive Behaviour Causes

40 Are physical needs met? Physical

41 Intellectual Understand changes in memory, reasoning, speech/language, problemsolving ability and judgement

42 Emotional Recognize the person s emotions

43 Capabilities Know person s strengths and abilities Match the task Match communication

44 Environment Is the environment supportive?

45 Social Understand social and cultural history

46 ABC s of Responding to Behaviour

47 Remember

48 Caregiver Tips Match instructions to abilities Match tasks to abilities Be positive, calm and friendly Look for reason behind the behaviour

49 Preventing Responsive Behaviours Enabling abilities Promoting well-being Bringing happiness Being a Best Friend Keeping person in comfort zone

50 What Can You Offer a Person Living with Dementia? Person-centered focus Events Approach Communication Environment

51 Partners in Care Who are the partners in care?

52 Thank You

53 All so-called problem behaviour should be viewed, primarily, as attempts at communication, related to need. It is necessary to seek to understand the message, and so to engage with the need that is not being met. Tom Kitwood

54 behaviours that we think are strange, unusual or upsetting are often the person s way of coping with a world that is real to him or her. Virginia Bell and David Troxel

55 To look is one thing, To see what you look at is another, To learn from what you understand is something else, BUT To ACT on what you learn is all that really matters. Sir Winston Churchill

56 Persons With Dementia Say Maybe I don t know who stands before me But I can recognize your love and caring. Maybe I don t know where I am But I can recognize that this is a safe place to be.

57 Marg Eisner, Director of Programs Anne Swift, First Link Coordinator March 31, 2009

58 Welcome! Introductions Handouts Background Importance of early diagnosis First Link Key elements of the program Referral process Learning series

59 Background - Dementia Dementia is a syndrome consisting of a number of symptoms that include: loss of memory, judgment and reasoning changes in mood, behaviour, communication abilities and a progressive loss of ability to function Alzheimer's disease is the most common of a large group of disorders known as "dementias".

60 The Impact of Dementia on Canadian Society NOW: 500,000 Canadians 1 in 11 persons over 65 have Dementia 72% are women Not all are old 71,000 under 65 (14%) 50,000 under 60 (10%) Hamilton has over 8,000 persons with dementia - Halton has over 4,200 persons with dementia

61 Some Other Interesting Statistics A new case every 7 seconds (world) A new case every 4 minutes (Canada) 3 rd most expensive disease in Canadian Healthcare Causes > 70% Nursing Home admissions 1 in 4 Canadians have a family member 1 in 2 Canadians knows someone with dementia The prevalence of dementia in Canada will increase in the next twenty years from the current 450,000 to approximately 750,000

62 Stage of Dementia At Time of Diagnosis 45% mild 45% moderate 10% severe

63 Delay in Treatment (2.5-3 years) 1. Delay Family/patient recognition of symptoms. 2. Delay Family/patient seek help. 3. Delay Health professional recognition of problem Which results in 1. Delay Assessment/investigation/diagnosis 2. Delay Starting treatment Dr. Wm Dalziel, Chief, RGP Eastern Region

64 Benefits of Early Diagnosis Social/financial planning Early caregiver education Safety: compliance, driving, cooking Advance directives planning Right/Need to know

65 First Link : Purpose An active referral program to help support persons with dementia and their families throughout the course of the disease.

66 First Link : what is it? First Link is a trademarked referral program that Links individuals diagnosed with Alzheimer s or a related dementia and their families To a community of learning, services and support Through their local Alzheimer Society and other community partners As early as possible in the disease process

67 Why was First Link started? To link newly diagnosed individuals and families to learning, support, services To maintain linkages and provide support throughout the continuum of the disease To increase effective utilization of community resources To reduce incidence and intensity of caregiver stress To raise community awareness about ADRD

68 Why use First Link? Reluctance of individuals and family members to access education and support until a crisis situation develops

69 Why use First Link? Evidence indicates those people who are provided counseling and support services early in the continuum of the disease and receiving support on an ongoing basis, tend to be better equipped for the challenges that will arise

70 First Link : Proven Success and Evaluation FL began in Ottawa 2002 Extensive evaluation in pilot sites funded through MOHLTC Aging at Home funding through LHINs LHIN 4 Aging at Home funding received 2008 FL in Saskatchewan and BC FL included in the 3 rd Consensus Guidelines for Dementia Care in Canada

71 First Link services are FREE

72 Key Elements of First Link Direct referrals Early intervention and on-going support Community collaboration Learning opportunities All services are free

73 Direct Referrals Families often too overwhelmed to initiate call to ask for help Referral comes directly from health care provider To be implemented as an automatic next step in diagnostic process Referrals are phoned/faxed in

74 After Your Referral is Received Three attempts to contact At time of contact - Support and Information - Links to community resources - Introduction to ASHH programs and services - Invitation to Learning series Information package is provided Follow up via home/office visit, mail and/or telephone throughout continuum of disease

75 Early Intervention On-going Support Links need to be made early Families will then know who to call Build relationship for continuum of journey More likely to access services down the road

76 Community Collaboration Referral to other community agencies depending on circumstances and identified need

77 Benefits of Collaboration Increased communication through initial referral process and referral follow up Reduced duplication of services Access to the right provider at the right time Families appreciate and benefit from learning from different health care professionals

78 FIRST STEPS PWD & carepartner 4 sessions, daytime FIRST STEPS for family & friends Carepartner 5 sessions, evenings Care Essentials Carepartners 4 sessions, evening OPTIONS FOR CARE Carepartners 3 sessions, evening CARE IN THE LATER STAGES Carepartners 3 sessions, daytime

79 Learning Opportunities Education is provided throughout the year at various locations Four distinct Learning Series offer Just in Time learning opportunities Education for those with Early Stage AD Family Care Partners Children and Youth

80 Other Services Available Discussion Groups: Just for Us (early stage PWD) Care Partner Between Us (early on-set and under age 65) Adult Children Long-Term Care Men s Breakfast Group Diner s Club

81 First Steps (learning series for PWD and Care Partner) Four Sessions: 1. Overview of ADRD 2. Brain and Behaviour 3. Coping Strategies 4. Legal and Financial Matters & Community Resources

82 First Steps for Family and Friends (for family members and friends of PWD) Five Sessions: 1. What is Dementia? 2. Brain and Behaviour 3. Drug Treatment and Research 4. Legal and Financial Matters 5. Coping Strategies & Community Resources

83 Care Essentials (for family members of PWD in mid-stage dementia) This series is co-facilitated with our community partners Four Week Series: 1. The Progression of Dementia 2. Day-to-Day Care 3. Understanding Responsive Behaviour 4. A Caregiver s Personal Story and Community Resources

84 Options for Care (for family members of persons with moderate to advanced dementia) This series is co-facilitated with our community partners Four Week Series: 1. Options for Care: Increasing Care Needs of Your Family Member 2. Long-Term Care: How the System Works 3. Coping with Change

85 Care in the Later Stages (for family members of persons with advanced, end-stage dementia) This series is co-facilitated with our community partners Three Week Series: 1. What to Expect: The Natural Course of disease at the End of Life Stage 2. Pain and Distress: Looking for Cues 3. The Face of Caring: Providing Comfort and Giving Pleasure

86 Benefits - Client Perspective From our initial introduction with the First Link learning series we have been able to better understand the disease, its progress and what we had to do to prepare for the future. As my husband s disease progresses, I am able to not only apply what we had learned but also access services that were discussed. It has made me role as caregiver easier to cope One of the wonderful things we cherish from the First Step s program was the friends we made, who are facing the same challenges as we are, and with whom we continue to socialize with after the learning series was complete.

87 What a Geriatric Assessor says As a health care professional First Link provides a much needed and valued service. Receiving a diagnosis of any kind of cognitive change can be very difficult for the client and their families. Having First Link to refer them to I am confident that they are going to get timely advice and support not only at the point of diagnosis but as their disease, circumstances and needs change.

88 What a Family Physician says As a family physician who cares for individuals with a multitude of chronic diseases, I welcome any help I can access to assist my patients and their families. In these days of limited resources, other professionals often have more time and information to share with the public than I have, as I juggle the demands generated by caring for an aging population.

89 Currently A referral to First Link is considered best practice in the provision of dementia care 26 Alzheimer Society Chapters are offering the First Link program in Ontario: the Alzheimer Society of Saskatchewan and British Columbia are also offering First Link Anywhere in Canada, the Alzheimer Society should be the health care providers first contact after diagnosis

90 Working together to link individuals and families affected by Alzheimer Disease or dementia to a community of learning, services and support