Different Strokes for Different Folks: Variable Approaches to Different Forms of Dementia
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Different Strokes for Different Folks: Variable Approaches to Different Forms of Dementia Julie Feil, MSW, LCSW The Memory Center Affinity Health System The Goals of The Memory Center We see individuals of all ages with all forms of memory loss in various stages. To identify and provide treatment options for those with memory disorders To advocate for early detection! Why is the Diagnosis Important? It allows us to identify what form of memory problem we are dealing with. This results in: More focused education and supportappropriate to family and individual More accurate and effective pharmaceutical treatment modality choice Increased awareness for families and individual Rule out treatable causes of dementia It is like Stopping a Rolling Truck! Barriers to Obtaining a Diagnosis Belief that it is “Just normal aging” Stigma attached to “Alzheimer’s Disease” Fear Lack of Insight into Problem Denial Embarrassment Determining the Diagnosis Appointment includes: The Neurological or Medical Examination The Neuropsychological Testing The Psychosocial Evaluation Possible Diagnosis’ Alzheimer’s Disease Mild Cognitive Impairment Probable Lewy Body Dementia Vascular Dementia Frontotemporal Dementia Normal Pressure Hydrocephelus Sleep Apnea Pseudodementia- Depression Epilepsy Parkinson’s Disease Plus Alcohol Related Dementia Imaging Studies Extremely helpful tool in diagnosing which particular type of memory disorder is likely present. A trained physician can now identify classic Alzheimer’s Disease with 98% certainty. Alzheimer’s Disease What is Alzheimer’s Disease? The most common cause of dementia Irreversible, progressive disease Affects the brain by destroying neurons – first in the hippocampus (memory area of the brain) then spreading to other areas Neuron degeneration is felt to be from plaques consisting of beta amyloid proteins that are deposited and tangles in nerve cells Is it in the Water? “Why are so many people ‘getting it’ “ is a common question. We do not know the exact cause nor do we have a cure. Latest research is focusing on diet and lipids. This is a disease that, predominantly affects those > 65. As we are living longer, the prevalence is thus higher. Neuropsychological Testing Following testing, individuals with MCI show an isolated memory loss. Those with Alzheimer’s Disease show a pattern of increased difficulty with memory, categorical fluency, orientation, and emerging problems in construction and calculations. Exercise Name as many animals as you can in 1 minute Measures catagorical fluency Individuals with some form of progressive memory disorder will score less than 12 and should be evaluated. A better predictor of Alzheimer’s disease or MCI than the Mini Mental and can easily be used quickly as a screen in doctor’s offices Mild Cognitive Impairment Being researched as a likely “precursor” to Alzheimer’s Diseaseconsists of mild memory loss that appears progressive in nature It is crucial that these individuals are assessed as early preventative interventions are showing promise in delaying the onset or “conversion” to Alzheimer’s Disease! Assessment Questions Short term memory loss? Financial management Repetitive questions? Depression? Anxiety? Misplacing items or hiding items? Orientation to person, place and time Change in ability to perform hobbies or household tasks? Occupational issues? Depression Screen It is also important to address depression using a depression screening tool such as the Geriatric Depression Scale or Beck Depression Inventory. Why? Studies suggest between 20 and 30% of dementia patients in early stages develop Major Depressive Disorder and between 3040% in middle stages. Not uncommon, depressive symptoms need to be monitored closely on a frequent basis and treated appropriately. Characteristics - Early Short term memory loss and asking questions repeatedly are often the first signs Inability to complete familiar tasks Difficulty learning and retaining new information Misplacing items, often in inappropriate places A growing awareness of subtle changes may cause depression and frustration. Moderate Forgetting to turn off stoves, appliances Emerging safety concerns Problems with calculations and financial management Inappropriate in public More problems communicating, reading, writing Severe Severe loss of memory May be unable to recognize loved ones More hallucinations or delusions Void of emotion Needs assistance with all personal cares Difficulty chewing or swallowing. Treatments Cholinesterase Inhibitors are being used to slow the progression with good success: – Aricept – Razadyne – Exelon Other medication often used in conjunction with cholinesterase inhibitors (NMDA receptor antagonist) – Namenda Key Psychosocial Issues Individuals and families coping with Alzheimer’s Disease require ongoing support as the disease progresses. A referral to the local Alzheimer’s Association is recommended for ongoing needs Although there is “staging” documented and many follow the pattern loosely, everyone has a unique, individual experience. Supportive Approaches Care partners have various thresholds in terms of their ability to manage the care of someone with progressive Alzheimer’s Disease. Goal is to tackle each symptom as it emerges and seek manageable solutions Behavior issues are often signs of unmet, unexpressed needs. Important to increase activity level and provide cognitive “exercise” as well as physical and social activity. The Alzheimer’s Association Excellent organization for all types of memory disorders Provide support, education, advocacy and programming encompassing all aspects of the disease to individuals and their care partners. Other Resources for Individuals and Care Partners Adult Day Centers Home health agencies Respite care Transportation resources Care consultants Assisted living options County Departments on Aging / Benefit Specialists Aging and Disability Resource Centers Elder Law Attorney Support Groups Support groups are very valuable and take many forms. Groups exist for: – MCI patients – Early onset Alzheimer’s disease – Care partners (spouses, family, etc) – Adult Children of people with Alzheimer’s Disease – Early stage Alzheimer’s Disease Key Resources Books and Magazines: – The 36 Hour Day – Mace and Rabins – A Dignified Life: The Best Friend’s Approach to Alzheimer’s Care – Bell and Troxel – Reminiscence magazine (Reiman Public.) – Aging with Grace - Snowdon – Learning to Speak Alzheimer’s - Coste – Mayo Clinic on Alzheimer’s Disease - Peterson Resources continued: Websites: – www.alz.org – The Alzheimer’s Assoc. – www.alzheimers.org - Alzheimer’s Disease Education and Referral Center – www.alzstore.com – The Alzheimer’s Store – www.cwag.org – Coalition of WI Aging Groups – www.dhfs.state.wi.us/aging/dementia - WI Bureau of Aging & Long Term Care Resources – www.mayoclinic.com – Mayo Clinic Health Info Lewy Body Dementia Lewy Body Dementia A progressive brain disease and second leading cause of dementia in elderly. (20% of all dementia cases) Appears to affect men more than women Consists of protein deposits or “lewy bodies” that are widespread throughout the brain. Often the memory area looks fine on imaging. Cognitive decline occurs prior to or concurrent with parkinsonian features Earlier age of onset than Alzheimer’s Characteristics A probable Lewy Body Disease is defined when one meets 2 out of the 3 symptoms: – Fluctuating Cognition with clear variations in alertness. – Recurrent visual hallucinations that are very detailed – Parkinsonism – muscle stiffness and rigid, slowed movements Other Suggestive Features REM sleep disorders – vivid dreams, purposeful and sometimes violent movements Severe sensitivity to neuroleptics (medications for psychiatric symptoms) Abnormal depth perception – problems in visuospatial skills Mood lability, depression, aggression Neuropsychological Testing Individuals with LBD have difficulty in the following areas of cognitive thinking: – Orientation – Construction – Perception – Memory Hooper Visual Organization Test 30 “puzzle” pictures Indicator of visuospatial skills and posterior functioning. Shows how we perceive and make sense of the world around us. Often a good predictor of whether or not someone should be retested for driving abilities. Hooper Visual Organization Example Answer: LIGHTHOUSE Clock Draw Example Goal- To draw the face of a clock, put the numbers in the correct positions, and indicate the time at 11:10. Key Psychosocial Issues Families and affected person may be dealing early on with safety issues involving the physical issues, hallucinations, and misperceptions (often leading to trouble with driving). Also, the inconsistency of symptoms and confusion, creates stress as the family never quite knows what is coming next. Loved one may not recognize family or home at an earlier stage. Assessment Questions Sleep disturbance? Gait disturbance / Falls? Appears socially withdrawn at times Variable symptoms? Hallucinations? Disorientation? Suspiciousness? Wandering? Apparent slowed processing verbally and physically Other behavior problems or aggression? Supportive Approaches Families struggle with misperceptions- benefit from support of others in same situation (support groups). Care partners need respite! Often occurs at a younger agegrieve loss of retirement plans, etc. Individual often very insecure without loved one More rapid course than AD Physical and communication issues in addition to cognitive Common Interventions Due to Parkinsonism, individual is at a higher fall risk. Need to adapt environment and consider a Physical therapy evaluation Misperceptions! Eg. May perceive that a black rug is a hole, or texture change represents a different height/level. Occupational therapist evaluation, adjusting home environment, adjusting lighting and visual cues Wandering Risk – easily disorientated- Obtain Safe Return Driving Issues – becomes lost or does not recognize once familiar landmarks. Driver evaluation and subsequent referral to transportation resources suggested Treatments for LBD Cholinesterase inhibitors (medications approved for Alzheimer’s Disease) tend to work even better for people with LBD Parkinson’s Disease medications often help with the symptoms related to movement It is important to diagnose LBD as some antipsychotic medications given for hallucinations can cause severe reactions in patients with this disease. (eg. Haldol) Key Resources The Alzheimer’s Association The Lewy Body Dementia Association Websites: – www.lewybodydementia.org LBD Assoc. – www.zarcrom.com/users/alzheimers/ode m/od-d.html Directory of other Dementias – www.alz.org – The Alzheimer’s Assoc. The Frontotemporal Dementias Frontotemporal Dementias Neurodegenerative changes in the frontal and temporal lobes of the brain Several types depending on which areas show damage – eg. Picks disease (involves only frontal lobes) Occurs between the ages of 35 and 75 years (younger than AD and LBD) Some forms are genetic. Many early research programs are focusing on the frontotemporal dementias and “possible” reversible causes Characteristics There is generally an early loss of personal awareness and sometimes an increase in social disinhibition and mood swings. Depression is common Often diagnosed at an earlier age, therefore occupational problems may exist. Family members are usually quite frustrated and require special counseling or support More rapid progression The Frontal Lobe - the Gatekeeper People who suffer from the FTDs may exhibit inappropriate behaviors in public, be less inhibited, may show mood swings, or may become quite the opposite- more depressed, apathetic and socially withdrawn. Neuropsychological Testing Frontal area involves the “doing” part of the brain- executive functioning thus testing shows difficulties in the areas of: – Behavior – Reasoning and Judgment – Planning – Initiation Neuropsychological testing continued… Temporal Area involves speech and language thus testing reveals difficulty with – Naming – Comprehension – Word finding – Speech (aphasia often noted) Example – Boston Naming Test Key Psychosocial Issues Loss of Insight: Often people with frontotemporal dementias do not have insight into their difficulties. This makes it more challenging for families to provide care and that care is occasionally met with resistance Compulsive behaviors Lack of empathy for othersOften the care partner desires an acknowledgement for their hard work that never comes. Assessment Questions Judgment and Insight Decision making, impulsivity Mood changes – depression, apathy Alteration in planning and initiation Susceptible to sweepstakes Compulsive behaviors Speech and language issues Socially or sexually inappropriateness Work related problems Supportive Approaches Often the disinhibition and behavior changes combined with the lack of insight put care partners in very difficult situations. Families benefit greatly by connecting with others. Examine behaviors and look at underlying needs that are unexpressed or the emotions behind the behaviors. Document approaches and redirections that work. Compulsive behaviors can be draining on loved ones. Need to choose battles wisely! Communication As the temporal lobes become damaged, one will often will see changes in ability to express self and converse with others. A referral to a speech therapist and communication books may be helpful Treatments The cholinesterase inhibitors (Alzheimer’s medications) work in approximately 1 in 3 patients with FTD. We are not sure why. SSRIs or specific anti-depressants are being investigated as chemically beneficial and also help control behavior symptoms and accompanying depression Key Resources Books: – The 36 Hour Day – Mace and Rabins – What if it’s Not Alzheimer’s? A Caregiver’s Guide to Dementia – Radin and Radin – Websites: www.alz.org – The Alzheimer’s Assoc. www.ftd-picks.org – The Assoc. for Frontotemporal Dementias Vascular Dementia Vascular Dementia or Multi Infarct Dementia Caused by “hardening of the arteries” or mini silent strokes in the brain The blockages of the small arteries of the brain caused by poor blood flow. Can be prevented by a heart healthy diet and other stroke prevention techniques (controlled blood pressure and cholesterol) More common in those with Alzheimer’s Disease as a co-existing problem. Characteristics Early on there may be changes in: Memory and cognition Decision-making Sleep disturbance Apathy Sensory Loss More physical limitations Language problems Assessment and Approaches Any or all of the above symptoms or approaches mentioned may apply dependent on where the damage has occurred in the brain. A clear differentiation of diagnosis is thus important. Treatments Goal is to prevent further strokes through diet and exercise. Generally speaking, what is good for the heart is good for the brain Anticoagulants such as Aspirin, Aggrenox, Plavix, or Vit. E are often used. Cholinesterase inhibitors are utilized – Razadyne has been approved for use and has shown benefit in those with Vascular Dementia Summary There are many kinds of dementia – it is inaccurate to assume “Alzheimer’s Disease” prior to a complete diagnostic assessment. It is important to determine which type of memory loss one has as there are various treatments, prognosis, and expectations related to each. Some are also preventable! Each form has its own unique effects on family and care partners. It is important to tailor our approach to that individual’s needs. What Comes First? Alzheimer’s Disease Memory, repetition, confusion Lewy Body Dementia Hallucinations, variability, movement problems Behavior changes, apathy, language problems Depends on area of damage Frontotemporal Dementias Vascular Dementia QUESTIONS? FOR YOUR REFERENCE Comprehensive Psychosocial Interventions Should include: Assessment of psychosocial needs of the individual with the memory loss and their family. Ruling out other possible contributing causes of dementia such as depression and alcoholism Providing support and counseling as they journey through the various stages of the disease Providing education and resources to meet ongoing needs. Advocating for the individual and family. Promotion of healthy lifestyle and nonpharmaceutical interventions if possible Continued… Assessments of: Family History of Memory Loss Family Dynamics and Support Systems Social and Occupational implications Safety and Potential Environmental Barriers Communication Issues Continued… Mental health history Activities of Daily Living – grooming, dressing, and bathing (The Functional Activity Questionnaire is often given) IADLs- meal preparation, cleaning, shopping, money management Medication compliance Continued… Driving Financial Planning Emerging Behavioral Issues Advanced Directives and Financial Planning End of Life Care