alzheimers disease: supporting the person supporting their caregivers shelly zylstra...

Alzheimer’s Disease:Supporting the Person

Supporting their Caregivers

Shelly Zylstrazylstra@dshs.wa.gov

360-676-6749

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.

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

Dementia is Not Normal Aging

20 year old brain 80 year old brain

The Brain

• Adult weight: about 3 pounds

• Adult size: a medium cauliflower

• Different parts of the brain do different things

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

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

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

Different Parts-Different Roles

• Even though the activities are similar, a different part of the brain is involved– Walking-Kicking– Talking-Swearing– Chewing-Swallowing

Hearing Words Speaking Words Seeing Words Thinking about Words

Scans Show the Loss of Activity

Reversible Dementias

• Intoxications• Infections• Metabolic

disorders• Depression• Medication

Problems

• Brain tumors• Head injuries • Normal

pressure hydrocephalus

• Dehydration

Irreversible Dementias

• 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

Prevalence of Alzheimer’s Disease by

Age

0

10

20

30

40

50

%

65-74 75-84 85+

65-74

75-84

85+

Stages of Alzheimer’s diseaseFunction Early StageMemory Routine loss of recent

memory

Orientation Seeks familiar and avoids unfamiliar

Language Mild aphasia (word finding difficulty)

Motor Some difficulty writing and using objects

Mood Apathy & depression

ADL’s Needs reminders with some ADL’s

Stages of Alzheimer’s diseaseFunction Middle StageMemory Chronic, recent memory

loss

Orientation May get lost at times, even in home

Language Moderate aphasia (word finding difficulty)

Motor Repetitive actions; apraxia (unable to start an action)

Mood Some mood and behavior disturbances

ADL’s Needs reminders and help with most ADL’s

Stages of Alzheimer’s diseaseFunction Late StageMemory Mixes up past and

present

Orientation Misidentifies familiar places

Language Expressive and receptive aphasia; often does not understand

Motor Bradykinesia (very slow walking); fall risk

Mood Increased mood and behavior disturbances

ADL’s Needs reminders and help with all ADL’s

Stages of Alzheimer’s diseaseFunction Terminal StageMemory No link to past or present

Orientation Oblivious to surroundings

Language Mute or a few incoherent words

Motor Little voluntary movement; dysphasia, myoclonus, seizures

Mood Completely passive

ADL’s Total Care

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

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

Might Even Involve the Law!

• Wandering/Lost• Auto Accidents• Indecent Exposure• Homicide/Suicide/Domestic

Violence• Suspicion of DUI/Intoxication• Abuse/Neglect• Trespassing• Shoplifting

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.

Challenging Behaviors

• Agitation, anger, depression, aggression

• Combativeness• Psychosis• Wandering• Sleeplessness • Sundowning• Unpredictable

situations

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.

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

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

Aggression

• Verbal accusations and insults• Aimless screaming• Refusal to cooperate with

simple requests• Physical assaults• Self-injury such as head

banging or biting oneself

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.

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.

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.

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?

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

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.

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

Hints to Manage Behavior

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

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

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?

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.

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.

• 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.

• 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.”

• Provide Information • Provide Assistance• Respite Care

– Adult Day Care• Counseling or Support Groups• Training• Supportive Services

– Caregiver Consultants– Loan Closet

Caregiver Support

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