Cognitive Impairment and Dementia: What You Need to Know about Alzheimer's Disease and Related Disorders Alzheimer’s Association Massachusetts and New Hampshire Chapter Image of Brain

2 Why study this topic? Increasing prevalence of Alzheimer’s disease in our aging population Persons with physical and developmental disabilities are living longer & face the same age-associated risk Persons with Down Syndrome are at increased risk, with onset at younger age Dementia symptoms can be difficult to distinguish from symptoms of other conditions African-Americans & Latinos may be at increased risk

3 Facts about Alzheimer’s disease 6 th leading cause of death in the U.S. 5.3 million Americans and their families live with Alzheimer’s Someone will develop Alzheimer’s every 70 seconds 1 out of 8 over 65; 1 out of 2 over 85 have the disease About a quarter million under 65 have Alzheimer’s

4 Persons with disabilities and risk of Alzheimer’s Individuals with developmental or intellectual disabilities have the same risk as the general population. Other risk factors - Clinical depression, heart disease and diabetes - Brain injury (like stroke or traumatic brain injury) - Down syndrome

5 Alzheimer’s disease and Down syndrome What’s the connection? Current research shows that the extra “gene dosage” caused by the third chromosome of Down syndrome (trisomy 21) may be a factor in the development of Alzheimer’s disease.

6 Alzheimer’s disease and Down syndrome Individuals with Down syndrome are at risk for developing Alzheimer’s as early as age 35. The average age of onset is 50 The number affected increases with age – up to 65% of individuals with Down syndrome over age 65 have symptoms of Alzheimer’s. However, a significant number of people with Down syndrome are older than 40 and show no symptoms of Alzheimer’s.

7 What we will cover today What is the difference between dementia and Alzheimer’s disease? How does Alzheimer’s affect the brain? How does this affect individuals with disabilities? Strategies and resources for support

8 What is dementia? Dementia is an umbrella term used to describe symptoms of a loss in cognitive abilities severe enough to interfere with daily life. Alzheimer’s is the most common cause of dementia and accounts for 70% of all cases. Image of Brain

9 What is dementia? Not a disease or complete diagnosis. A set of symptoms, which can include: –Memory Loss –Problems with language –Confusion –Changes in visual or spatial perception –Poor or decreased judgment –Problems with thinking, planning and organizing tasks –Changes in mood or behavior –Changes in personality

10 What causes dementia or dementia-like symptoms? Irreversible –Alzheimer’s Disease (most common) –Vascular dementia –Parkinson’s Disease –Lewy Body dementia –Frontotemporal or Pick’s disease Reversible or Treatable –Brain Tumor –Normal pressure hydrocephalus (NPH) –Infection –Depression –Medication side-effects or reaction

11 Alzheimer’s (AHLZ-high-merz) disease is a progressive brain disorder that gradually destroys brain cells and affects a person's memory, ability to learn, make judgments, communicate, and carry out basic daily activities. Alzheimer’s is not normal aging. It is a progressive, fatal disease and has no cure.

12 What’s the difference? Someone with Alzheimer’s Someone with normal age-related changes Forgets whole experiencesForgets parts of experience Rarely remembers laterOften remembers later Is gradually unable to follow written/spoken directions Usually able to follow written/spoken directions Is gradually unable to use notes Usually able to use notes Is gradually unable to care for self Usually able to care for self

13 Challenges for early detection Initial symptoms can be gradual and go unnoticed Initially symptoms vary throughout the day and from one day to the next Changes in memory, thinking or behavior are common symptoms of a number of health conditions Symptoms may be more difficult to measure early on in individuals who have verbal expression, hearing and/or vision impairments

14 Challenges for early detection For persons with disabilities: –Initial symptoms of dementia may be viewed as part of a preexisting condition –Behavioral changes may be misinterpreted as non-compliance with a behavioral modification program –Cognitive changes in persons with significant physical or developmental challenges can be more difficult to measure

15 Importance of a diagnosis Diagnostic assessment will: –Determine if changes are caused by current health condition –Rule out other treatable causes of symptoms –Create a baseline for the future –Make treatments available for Alzheimer’s and related disorders early in the disease process, when they are likely to be most effective

16 Diagnosis and evaluation Medical and social history Physical exam Neurological exam Neuro-psychological evaluation Image of family speaking to physician

17 Alzheimer’s shrinks the brain Normal brain on left Brain with Alzheimer ’ s on right Diseased brain 1/3 size of normal brain.

18 “It’s important to know what disease the person has, but it’s more important to know what person the disease has.” - Dr. William Osler Image of mother and daughter

19 Balancing safety and independence Operating principles: –Respect independence and the right to take risks –Honor a person’s right to self-determination –Support the choice to live in the least restrictive environment For persons with dementia: –We need to consider these principles along with a person’s changing capacity –Respond appropriately when a person with dementia is a danger to self or others –Understand that the severity of the dementia impacts one’s ability for self-determination

20 Cultural considerations How eye contact, gestures, facial expressions and personal space are interpreted How a person expresses ideas and feelings How a person reacts to authority figures and the “system” What a person values & what motivates them to do (or not do) something What rituals and beliefs are associated with major life events, including illness & death What support system an individual has and is willing to use.

21 How to maintain independence despite Alzheimer’s disease Address safety concerns Utilize communication techniques Behavior and symptom management strategies Family involvement & informal supports Resources & how to access them

22 Common safety concerns Medication management Environmental hazards Getting lost, “wandering” Driving Emergencies

23 Improve communication by connecting Make eye contact and speak face to face. Say your name or the person’s name when approaching or initiating contact. Be aware of your body language and voice inflections. Respond to where the person is emotionally. Avoid responding with annoyance or frustration.

24 Offer the word if the person cannot think of it. Encourage the person to let go of the thought and come back to it later. Simplify requests or questions to short, specific or one-step directions. Respond to the person’s emotion, even if you do not understand their words. Assist with problems of language or expression

25 Behavioral issues Confusion Repetition Anxiety or agitation Suspicion Aggression Image of person in distress

26 Behaviors may be related to Physical discomfort Over-stimulation Unfamiliar surroundings Frustration due to complicated tasks Frustration due to communication problems Medication problems or interactions

27 Habilitation and person centered care These approaches to good dementia care: –Focus on a person’s skills and abilities and prevent excess disability –Consider a person’s interests and preferences –Modifies the environment for safety and to promote independence –Connect on a personal level and encourage positive emotions

28 The Most Important Thing to Remember… We must first change our approach if we want the person with dementia to change their behavior

29 Families and caregivers Education – Gain understanding about the disease – Be aware of treatment options: medical and non-medical – Learn helpful communication techniques – Understand behavior and symptom management strategies Emotional Support –Support group, individual counseling Access formal supportive services

30 Resources – Build a team ASAPs - State Home Care System Private Home Care agencies Geriatric Care Managers Alzheimer’s specific Adult Day Health, Nursing Home, and Assisted Living Neurologist, geriatrician, geriatric psychiatrist Independent Living Center Elder Law Attorneys Alzheimer’s Association

31 The Alzheimer’s Association Can Help 24/7 Helpline Care Consultation Support Groups Medic Alert® + Safe Return® Education Programs and Workshops

32 Alzheimer’s Association MA/NH Chapter 24/7 Helpline

33 Grant Support This training was funded by the Administration on Aging/Administration for Community Living through the Alzheimer’s Disease Supportive Services Program (ADSSP) – Grant 90AI0014