Alzheimer's Association - Desert Southwest Chapter

Alzheimer's
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Medical Scientific Advisory Committee

TIPS ON COMMUNICATING WITH CONFUSED PERSONS

Create a calm environment. The tone of your voice and your facial expressions are very important in speech. Try not to over-react to a situation. Take things slowly and smile whenever possible.
Do NOT assume the person cannot understand what is being said. NEVER talk about the person as though he/she is not present.
Avoid quizzing the person on names and dates. Not knowing an answer is embarrassing. If you want to ask questions, try to know the answers beforehand and help the person to answer. Often when given a cue, the confused person will be able to answer adequately.
Use gestures when trying to get your messages across. Try using more than one sense to communicate, such as touching as well as talking.
Try to appeal to the person’s sense of humor, but never laugh at them.
Be reassuring. If you don’t know the answer about someone or some thing, try, “I’m sure everything is all right.”
Praise the person’s actions whenever possible but do not patronize. Compliment a new hairdo or outfit that may be new to you.
If the person starts or continues to walk while you are talking to them, keep moving along in front of him or her. Do not try to stop the person. If you need to change directions, ease into the move by distraction.
Do NOT argue about statements you know to be untrue. Insisting something is true to someone who believes facts to the contrary can only make the situation worse. Example: The person insists her husband will be joining her for dinner and you know her husband is deceased. Reminding her he is gone may prove very upsetting, and can re-activate feelings as if his death just happened all over again. The best approach is to gently distract the person onto a different subject. A temporary change of subject will often solve the problem and divert the person’s attention to a different thought altogether.
Simplify each task into single steps. Be patient and use short sentences. Don’t overwhelm the person with a string of instructions. Example: Instead of saying, “Put on your shoes and socks,” say, “Put on your socks.” When that is accomplished, then say, “Put on your shoes.”
Avoid situations that bring about frustration and anger. Try to anticipate problems to prevent them from happening. This will get easier as you get to know the confused person better.
Encourage him/her to participate in confused adult-appropriate/failure-free activities that provide pleasure. Be aware, though, that individuals may have short attention spans. Find out what activities they have enjoyed in the past.
The most important rule is to treat the confused person as an adult, and to always be respectful.

TIPS ON DEALING WITH AGGRESSIVE BEHAVIOR

Avoid trying to reason or argue with them, as it only adds to confusion and increases over-reaction.
Remember that a person with dementia cannot think of several tasks at once. For example, bathing requires unbuttoning, undressing, finding the bathroom, turning on faucets, and climbing into a tub. At the same time, he/she may feel insecure without clothes on, and feel they have lost their privacy and independence. It can be overwhelming for a person who can’t remember how to do all of these tasks or process all these activities at once. Remember patience and time are key in these types of activities.
If a person becomes hostile, stubborn, or nasty, fully accept that these behaviors are responses the person cannot control.
If possible, remove the person from the uncomfortable situation in a quiet, unhurried way. The short-term memory will likely not retain the uncomfortable situation.
Give the person time to respond. Wait and reduce the confusion around the person. Fewer people, less noise.
Various aids can help remind the person about what is going on. Follow familiar routines. Leave things in familiar places. Provide brief, written instructions. Example: Putting labels on kitchen drawers like “silverware” and “towels” may help.
Simplify what the person has to think about. Avoid complicated details.
Do not respond to a confused person with an expression of frustration or anger; doing so will only make the problem worse and upset them more.
Always speak calmly, take things one step at a time, and move slowly. Do NOT come up to a confused person quickly from behind – this can startle them.
Gently pat or hold their hand.
Try not to become frustrated or discouraged yourself. Try to examine what is happening. Know that the confused person is not behaving erratically on purpose. Identify what is upsetting them and consider the ways you can change it.

TIPS FOR HOME SAFETY

Register with SAFE RETURN. Be sure to include a current photo with your application.
Make neighbors aware of your loved one’s diagnosis so that if they notice your loved one wandering they will quickly alert you.
Be attentive around your loved one; always be looking for new potential hazards in the environment.
Find a good “handyman” that is dependable and can help you at short notice.
Lock up or dispose of toxic materials such as cleaning fluids, insecticides, and medicines so that they are not accidentally ingested by your loved one who has memory problems.
Learn to disable the car. A person with memory loss should never drive; they can easily get lost and cannot react quickly enough or appropriately to road hazards. Do not risk the life of your loved one and other innocent people on the road.
Place locks on the top of doors, out of sight line. Installing doorbells will alert the caregiver if the door opens or closes.
Cover or remove mirrors—especially in the bathroom. A person with memory loss may interpret their reflection as a stranger in the home and could lead to an accident.
Remove unnecessary rugs to prevent falls or secure rugs (and other easily movable furniture) with a non-slip type backing.
Remove unnecessary furniture to keep walkways clear but try not to rearrange furniture unless absolutely necessary.
Keep decoration simple with plain walls and carpets and eliminate clutter.
Remove poisonous plants (like oleander) so they are not mistakenly eaten.
Place a lock on the thermostat and water heater so that a person with dementia cannot adjust them. Be aware that to prevent burns water should be not hotter than 120° F.
Install a fire extinguisher in the kitchen.
Remove knobs from the stove so that the person with memory loss cannot switch it on. Install child safety latches on the inside of cabinets where cleaning products are kept.
Place non-slip mats in showers and tubs.
Install grab-bars by the toilet, shower, and bath. Towel rails are NOT a substitute.
Learn the Heimlich maneuver.
Install night-lights, especially between the bedroom and bathroom.
Install pool safety devices including gate locks.
Post important numbers by the telephone: police, fire, family, and friends.
Keep a recent photo of your loved one available. Have a plan for your loved one in case you, the caregiver, are unable to provide care.

Call the Alzheimer’s Association Desert Southwest Chapter at 602.528.0550, or 623.815.2494 for literature and tips to create a safe home for persons with memory loss.

Selecting a Facility

The following questions are points to consider when selecting a nursing or assisted living center or home for your loved one:

Necessary Basics:

1. Is the facility currently licensed by the AZ Dept. of Health Services to provide the level of care needed?

2. Will the home give you a copy of the admissions contract and resident care policies to study?

a. Does the contractual process allow resident, family, and physician involvement?

b. When may a contract be terminated? Are there refund policies?

3. Is a statement of residents’ rights posted in clear view?

4. All Skilled Nursing Facilities (SNF’s) are required to display their most recent survey results in a public, easy-to-see location. Look for this in your visit – you have a right to this information.

5. What is the basic monthly charge?

6. What services are included in this charge? (personal laundry, activities, etc.)

a. Are these items written in the contract? If not, what are the additional fees?

7. In a skilled nursing facility, does the staff help the resident find available financial assistance if it is needed?

8. If repayment is to be made through Medicare, county, Veteran’s Administration, Bureau of Indian Affairs, or private insurance, is the nursing home certified to accept such placement?

Important Safety Features:

9. Are toilet and bathing facilities easy for disabled residents to use?

a. Is the home built to accommodate wheelchairs?

b. Are there grab bars and safety devices?

10. Are hand-rails available to aid in walking?

11. Is an emergency evacuation plan posted in a visible place?

a. Does the home have safety devices such as smoke detectors, sprinkler system, etc.

b. How often are fire drills and disaster drills practiced?

c. Are the halls clear for an evacuation?

Medical Necessities:

12. What is the policy for calling a resident’s doctor when a problem arises?

13. What provisions are made for medical emergencies?

a. For dental care?

b. For filling prescriptions?

c. For routine medical appointments?

14. In a skilled nursing facility, when a resident’s doctor orders special services (special diet, physical therapy, speech therapy, oxygen, tube feeding, other special care), can the facility provide for them?

15. Is self-administration of medication allowed?

16. To what extent are medical services available, and how are these services provided?

General Atmosphere and Resident Privacy:

17. Is the atmosphere warm, pleasant, and cheerful?

a. Do staff know residents by name and are they respectful?

b. Do residents socialize with each other?

c. Are the rooms well lit, ventilated, kept at a comfortable temperature and odor-free?

d. Does each resident have a reading light, comfortable chair, closet and drawers for personal belongings?

e. Are floors, windows, bathrooms, etc., clean?

18. Do the residents look well cared for and generally content?

a. Are they dressed in street clothes?

b. Are they allowed to decorate their own rooms?

c. Are they allowed to keep a few of their own possessions?

d. How does the facility select roommates?

e. Are there provisions of privacy?

19. Do residents, volunteers, and staff speak favorably and freely?

20. Are staff members cheerful and courteous?

a. Do they show genuine affection and respect toward the residents?

b. Do they smile and speak respectfully to the residents while talking to them?

Meals & Dining Accommodations:

21. Is the dining room clean, comfortable, and attractive?

a. Are the residents encouraged to eat in the dining room?

b. Are meals offered at set times only?

c. What is the meal schedule? Are three balanced meals a day offered, seven days a week?

d. What kinds of food are included in the menu? Does the menu vary?

e. Are snacks served?

f. Where are the menus posted?

g. Do residents who need it receive help with eating?

h. Are visitors allowed to eat with residents? Can residents eat meals in their room, unit, or apartment?

Family Involvement:

22. In what way does the home encourage the residents, families, and friends to assist in the care?

23. In what way does the home encourage suggestions from residents and their families?

24. Are family and friends encouraged to visit?

a. Are there indoor and/or outdoor places for private visits with family and friends?

b. Are residents allowed to leave the home with family and friends?

c. What are the visiting hours?

Recreational Activities:

25. Is there a variety of interesting social, recreational, and cultural activities planned?

a. Where is the schedule of activities posted?

b. Do residents participate in the activities?

c. Are supplies and equipment available for activities?

26. Does the residence have its own pets?

27. Are residents’ pets allowed in the residence?

Contact the Arizona Department of Health Services, Assurance, and Licensure Services Division for additional information on individual facilities (such as complaints that may have been filed against the facilities.)

Phoenix: 1647 E. Morten, Phoenix, AZ, 85020 602/674-9705

Tucson: 400 W. Congress, Tucson, AZ 85701 520/628-6965

Access the Assurance & Licensure Services (ALS) Web Site at http://hs.state.az.us/als/index.html to obtain information on long-term care facilities (Provider Databases); Consumer Guides, and State rules and laws.

Rare Dementia Fact Sheet

What Is Dementia?

Dementia is the loss of intellectual functions (such as thinking, remembering, and reasoning) of sufficient severity which interfere with a person’s daily functioning. It is not a disease in itself, but rather a group of symptoms that may accompany certain diseases or physical conditions. The cause and rate of progression with dementias vary. Some of the well-known diseases that produce dementia include Alzheimer’s Disease (AD) and others discussed below. Other conditions that may cause mimic dementia include depression, brain tumors, nutritional deficiencies, head injuries, hydrocephalus, infections (AIDS, meningitis, syphilis), drug reactions, and thyroid problems. It is imperative that all persons experiencing memory loss deficits or confusion undergo a thorough diagnostic work-up. This requires examination by a neurologist experienced in the diagnosis of dementing disorders and detailed laboratory testing. The examination should include a re-evaluation of all medications and a detailed family history. This process will help the patient obtain treatment for reversible conditions, aid the patient and family in planning future care, and provide important medical information for future generations.

Dementia w/Lewy Bodies (2nd most common form of dementia)

Progressive, rapid decline in cognitive skills that interferes w/daily living activities
Common symptoms include frequent & extreme fluctuations in cognitive skills, visual-spatial difficulties, recurring/detailed visual hallucinations, Parkinson's symptoms (falls, slow/stiff but no tremor), short term memory is usually good
Lasts up to 7 years, little evidence of genetic component, depression is common
Can use AD medications. Parkinson drugs and anti-psychotic medications often exacerbate symptoms
Frontotemporal Dementias (FTD) including Pick's (3rd most common form of dementia)
Progressive, usually between 40-65 years of age, significant genetic component
AD medications do not work for FTD, cannot slow progression, medication is used for symptom management
Lasts an average of 8 years. Disease does not usually affect orientation to time/place or visual-spatial orientation.
Symptoms depend on lobe affected [behavioral (right) language (left).]
Dramatic changes in personal and social behavior, hypochondriasis, rigid thinking and impaired judgment, overeating/cravings, loss of insight into behavior, mouthing of objects (hyperorality), compulsive behaviors, loss of empathy, lack of attention
Late stage symptoms include loss of speech, hyperoral traits, and movement disorders

Creutzfeldt – Jakob Disease (CJD)

Affects 1 in a million annually, usually between the ages of 50-75
Should be suspected when people develop both psychiatric and neurologic features (headache, loss of consciousness) within 4 months after the onset neurologic symptoms. Later features include aggression, hypersomnia, confusion, and gait disturbance.
More common in Libyan-born Jews, some rural communities in Czechoslovakia and Chile, those who took human growth hormone in the 70s, those who had trauma and surgery to the head, those with intra-ocular pressure
CJD prion (pathogen consisting of protein) transforms normal benign protein molecules into infectious deadly ones.
Transmission: through sporadic occurrence (no known origin), inherited (10-15%), or by direct contamination with infected neural tissue (iatrogenic transmission)
Progression: from memory failure/behavioral changes, difficulty in concentrating, lack of coordination, visual disturbances, muscle spasms (myoclonus) to complete loss of physical and mental functions, coma
No treatment and death usually occurs within months or a year

Huntington's Disease

Inherited disorder that affects personality, thinking, memory, speech, judgment, and motor control. Onset typically between the ages of 30-45 but there is a juvenile form
Early symptoms include depression, mood swings, forgetfulness, clumsiness, involuntary twitching, and lack of coordination.
Later symptoms include loss of concentration and short-term memory, involuntary movements of the head, trunk, and limbs. Dementia may develop in later stages

Primary Progressive Aphasia (PPA)

A clinical syndrome, not a neurological diagnosis
Average age of onset is 64, PPA is more common in males
Gradual decline of language skills, possible dementia in later stages
Diagnosis: aphasia (inability to think of words, speak correctly, understand others, read and write) for two years before other symptoms develop. Speech therapy can be effective for aphasia.
Concentrated loss of neurons in language areas of brain
Not curable but can treat symptoms such as depression. Average duration is 8 years.
Memory problems can be treated w/AD medications.

Subcortical Arteriosclerotic Encephalopathy (SAE) / Binswanger’s

Progressive neurological disorder, lasts up to 10 years
Gradual loss of motor/cognitive/behavioral abilities
May stabilize briefly, then progresses
Dementia, 1-side paralysis, seizures, abnormal gait, apathy, unable to make decisions, hardly speak, poor judgment, difficulty forming words, difficulty swallowing, incontinence, Parkinsonian symptoms, arteriosclerosis, hypertension

Vascular Dementia

General term for thinking impairment resulting from disruptions in the brain's blood supply to areas. involving memory, reason, and emotion with usually abrupt onset
Usually occurs between ages 60-75, can progress in step-wise manner
Multi-infarct dementia occurs when small strokes block arteries to the brain.
Isolated vascular dementia is uncommon, it is often a mixed dementia with AD.