Alzheimer’s Disease: Supporting the Person Supporting their Caregivers

1. Alzheimer’s Disease:Supporting the PersonSupporting their Caregivers Shelly Zylstra zylstra@dshs.wa.gov 360-676-6749

2. A Few Facts • Once considered a rare disorder, Alzheimer’s disease is now seen as a major public health problem that is seriously affecting millions of older Americans and their families. • In 2050, +70 million people will be over the age of 65; 20 million over the age of 85. • An estimated 14 million Americans will have Alzheimer’s disease if a cure is not found. • Alzheimer’s disease will be the leading cause of death among adults by the middle of this century.

3. What Is It? • Alzheimer’s disease is an irreversible, progressive brain disease that slowly destroys memory and thinking skills. • Not Normal Aging! • Alzheimer’s disease destroys brain cells and causes abnormal structural changes in the brain

4. Dementia is Not Normal Aging 20 year old brain 80 year old brain

5. The Brain • Adult weight: about 3 pounds • Adult size: a medium cauliflower • Different parts of the brain do different things

6. Cerebral Hemispheres • Where sensory information received from the outside world is processed; this part of the brain controls voluntary movement and regulates conscious thought and mental activity: • accounts for 85% of brain’s weight

7. Cerebellum • In charge of balance and coordination: • takes up about 10% of brain • consists of two hemispheres • Receives information from eyes, ears, and muscles and joints about body’s movements and position

8. Brain Stem • Connects the spinal cord with the brain • Relays and receives messages to and from muscles, skin, and other organs • Controls automatic functions such as heart rate, blood pressure, and breathing

9. Hearing Words Speaking Words Seeing Words Thinking about Words Different Parts-Different Roles • Even though the activities are similar, a different part of the brain is involved • Walking-Kicking • Talking-Swearing • Chewing-Swallowing

10. Scans Show the Loss of Activity

11. Intoxications Infections Metabolic disorders Depression Medication Problems Brain tumors Head injuries Normal pressure hydrocephalus Dehydration Reversible Dementias

12. Alzheimer’s disease Multi-Infarct Dementia Parkinson’s disease Lewy Body disease Creutzfeldt-Jakob disease Pick’s disease Huntington’s disease AIDS dementia complex Progressive aphasia Irreversible Dementias

13. Prevalence of Alzheimer’s Disease by Age

14. Stages of Alzheimer’s disease

15. Stages of Alzheimer’s disease

16. Stages of Alzheimer’s disease

17. Stages of Alzheimer’s disease

18. Alzheimer’s Symptoms • Very gradual onset • Picture may differ from person to person • Gradual withdrawal from active engagement with life • Narrowing social activities and interests • Lessening of mental alertness and adaptability • Lowering of tolerance to new ideas and changes in routine • Thoughts and activities may be selfish or childlike

19. Alzheimer’s Symptoms • Progressive memory loss • Difficulty remembering familiar things • Difficulty performing familiar tasks • Problems finding the right words • Misplacing things/ Messiness • Confusion and agitation • Poor judgment and poor decision making skills • Changes in personality – mood swings • Loss of initiative

20. Might Even Involve the Law! • Wandering/Lost • Auto Accidents • Indecent Exposure • Homicide/Suicide/Domestic Violence • Suspicion of DUI/Intoxication • Abuse/Neglect • Trespassing • Shoplifting

21. Behaviors • Alzheimer’s disease often causes a person to exhibit unusual and unpredictable behaviors. • This can easily lead to frustration and tension in the person with Alzheimer’s as well as the person responsible for them.

22. Challenging Behaviors • Agitation, anger, depression, aggression • Combativeness • Psychosis • Wandering • Sleeplessness • Sundowning • Unpredictable situations

23. Agitation, Anger, Depression • Agitated behavior can be disruptive to the elders daily life. • Anxiety may not be put into words but instead manifest physical symptoms such as a racing heart, nausea, or pain. • Agitation may increase the risk of harm to the affected individual and to others.

24. Agitation • Irritability, frustration, excessive anger • Constant demands for attention & reassurance • Repetitive questions or demands • Stubborn refusal to do things or go places • Constant pacing, searching, rummaging • Yelling, screaming, cursing, threats • Hitting, biting, kicking

25. Depression • Extreme tearfulness • Hand-wringing • An excessive need for reassurance • Other signs of extreme unhappiness • Loss of interest in things they used to love • Excessive sleep • Personality changes

26. Aggression • Verbal accusations and insults • Aimless screaming • Refusal to cooperate with simple requests • Physical assaults • Self-injury such as head banging or biting oneself

27. Delusions • When the person believes things that are not true. • Common examples of delusions would be: • Believing that one is in danger from others and that others have stolen items or money. • A spouse is unfaithful • Unwelcome guests are in the house • A relative or friend is an imposter and not who they claim to be.

28. Hallucinations • This is a false perception of objects or events involving the senses. • The person may see, hear, smell, taste or feel something that is not there. • If it doesn’t cause a problem it might be best to ignore it. • If it becomes continuous then look for a possible underlying physical cause.

29. Look for The “Why” • Physical discomfort caused by an illness or medications. • Over-stimulation from or overactive environment • Inability to recognize familiar places, faces, or things • Difficulty completing simple tasks or activities. • Inability to communicate effectively.

30. There is usually a Cause • Physical factors • Is the person tired because of inadequate rest or sleep? • Are medications causing side effects? • Is the person unable to let you know he or she is experiencing pain? • Environmental factors • Is the person over stimulated by loud noises, an overactive environment, or physical clutter? • Does the person feel lost or abandoned?

31. Sleeplessness and Sundowning • About 20% experience periods of increased confusion, anxiety, agitation, and disorientation from dusk to dawn. • End-of-day exhaustion (mental & physical) • An upset in the “internal clock” causing a biological mix-up between night & day • Reduced lighting and increased shadows • Disorientation due to the inability to separate dreams from reality when sleeping • Less need for sleep, which is common among older adults

32. Responding to Challenging Behaviors • Stay calm and be understanding • Be patient and flexible • Don’t argue or try to convince the person • Acknowledge requests and respond to them. • Try not to take behaviors personally • Accept the behavior as a reality of the disease and try to work through it.

33. Try to Determine the Cause • Often the trigger is some change in the person’s environment. • Clutter, new person in the room • Change in routine • Pain • Hunger • Thirst/dehydration • Full bladder/UTI • Fatigue/pending illness • Infections • Skin irritation • Constipation

34. Don’t Argue or disagree Confront Raise your voice Take offense Corner, crowd Try to reason Do Simplify the environment, tasks and routines Allow adequate rest between stimulating events Use labels or clues to remind Hints to Manage Behavior

35. Don’t Restrain, Shame, criticize Demand or try to force Talk down, ignore Explain, teach Rush Show alarm Make sudden movements Do Back off Use calm, positive statements Reassure Slow down Offer guided choices between two options Limit stimulation and offer simple exercises

36. Communication • Communication is critical and can be the basis for poor behavior • Are you asking too many questions or making too many statements at once? • Are your instructions simple and easy to understand? • Is the person picking up on your own stress and irritability? • Are you being negative or critical?

37. Communication • Remember people with Alzheimer’s Disease often find it hard to remember the meaning of words that you are using or to think of the words they want to say. • Identify yourself by name and call the person by name. Don’t ask, “Do you know who I am?” • Approach the person slowly from the front and give them time to get used to your presence. Maintain eye contact.

38. Communication • Try to talk away from other distractions such as a loud TV or others trying to join the conversation. • Speak slowly and distinctly. Use familiar words and short sentences • You may feel angry but don’t show it. If you are about to “lose it” try counting to ten. REMEMBER that this person has a disease and is not deliberately trying to make things difficult for you.

39. Keep things positive. • Offer positive choices with no wrong answers • If the person seems frustrated and you don’t know what he or she wants, try to ask simple questions that can be answered with yes or no or one-word answers. • Use gestures, visual cues, and verbal prompts to help. • If conversation causes agitation drop the issue rather than try to clear it up.

40. Use memory aids such as calendars & lists. • Explore various solutions. • Accept the behavior as a reality of the disease and try to work through it. • Acknowledge requests and respond to them. • Respond to the emotion and not the behavior. • Offer corrections as a suggestion. Avoid explanations that sound like scolding. Try “I thought that was a spoon.”

41. Caregiver Support • Provide Information • Provide Assistance • Respite Care • Adult Day Care • Counseling or Support Groups • Training • Supportive Services • Caregiver Consultants • Loan Closet

42. Resources • http://www.ahaf.org/alzdis/about/adabout.htm • http://www.mayoclinic.com/health/alzheimers-caregiver/AZ00018 • http://www.agis.com/ • http://www.nia.nih.gov/Alzheimers/Publications/caregiverguide.htm • Or Call your local Alzheimer Association Chapter