Alzheimer’s Disease Handbook

Elizabeth G. Fine, LCSWMount Sinai School of Medicine

Funded by a Grant from New York State Department of Health

© 2011

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Memory and AgingWhat is Memory

• Acquisition

• Storage

• Retrieval

Memory changes gradually over time

1. More time needed to learn new information

2. More time needed to recall information

3. More easily distracted

•Serious memory problems are not part of healthy aging

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Causes of Memory Disorders:Alzheimer’s Disease

• 15% of those over 65 have a memory disorder - Most common cause is Alzheimer’s disease (AD).– AD is a slow and progressive illness that affects the

brain impairing memory, thinking and behavior.

• There are 3 consistent identifying markers of AD:– Amyloid-rich senile plaques– Neurofibrillary tangles– Nerve cell death

• These changes eventually lead to clinical symptoms, but they begin years before the onset of symptoms

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AD and the BrainNo one knows what causes AD to begin, but we do know a lot about what happens in the brain once AD takes hold.

Pet Scan of Normal Brain

Pet Scan of Alzheimer’s Disease Brain

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Silver Staining of an Alzheimer’s Disease Brain

Plaque

Tangle

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Stages of Alzheimer’s Disease

Early: 2-4 Years• Short-term memory loss• Difficulty in concentrating• Poor judgment• Hesitancy to do things that once came easily• Problems finding the right expression/word• Withdrawn• Personality changes may occur• Anxiety about difficulty remember things• Anxiety about what is happening to them• Difficulty making decisions

Middle: 2-10 years• Repeating statements

• Difficulty remembering friends/and family members’ names

• Restlessness, especially in the late afternoon/evening (called sundowning)

• Fear of getting into the bathtub

• Difficulty dressing

• Perceptual-motor problems

• Increased difficulty organizing thoughts

• Problems with reading, writing, working with numbers

• Increased difficulty locating the right word

• May become suspicious and or irritable

• Possibly hearing or seeing things that aren’t there in fact

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Stages of Alzheimer’s Disease

Late:• Unable to recognize himself or others

• Unable to care for himself

• Difficulty swallowing

• Sleeps longer and more fitfully

• Bizarre or disturbing behaviors may occur; constant crying, hitting, biting, screaming

• Loss of control over bladder and bowels

• May experience abusive, angry, or aggressive behavior

• Bizarre sexual behaviors

Adapted from National Caregiving Foundation, pp.13 &14

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Treatments for Alzheimer’s Disease

• FDA approved medications:

- Aricept

– Razadine (Reminyl)

– Exelon

– Namenda

Other Causes of Memory Disorders Vascular dementia

• Parkinson’s disease

• Major Depression

• Alcoholism

• Normal pressure hydrocephalus, hypothyroidism, B-12 deficiency, neurosyphilis, frontal lobe dementia

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Healthcare Planning• In the early stages of the illness the individual is in a

position to make and plan for future health care needs. However, as the illness progresses this decision making ability declines significantly.

• Health Care Proxy:– What is it? – When is it needed?– How to use it?

• Living Wills:– What is it?– When is it needed?– How to use it?

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Effective Communication 1

1. The 3 Cs:– Calm– Consistent– Concise

2. A smile means more than words

3. Redirect rather than confront or explain

4. Create a routine

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Effective Communication #2

• Turn negatives into positives• Turn long explanations into short ones• Give the client no more than one or two

choices at a time• Use statements more often than questions

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Effective Communication 3

• Another technique to deal with repetitive questions:1. Your family member asks the question2. You answer it3. Your family member asks the question again4. You answer it, and then ask them to repeat the answer5. When your family member asks the question again6. You answer it, and then ask them to repeat

the answer7. If your family member asks the question again8. Ask them what you said the answer was, and they should

be able to give you the answer.

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Behavior Changes • Mood changes

• Personality changes

• Agitation

• Perceptual changes

• Sleep changes

• Appetite changes

• Sexual inappropriateness

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Evaluating the Behavioral Changes

• Make a chart to determine if there is a pattern to the behavior:– Time of day– The activity (bathing, eating, getting into a cab)– Who is present with the person at the time of the

behavior– Specific location (kitchen, at a party, at the theater)– Noise level; loud, quiet, etc.

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Evaluation the Behavior• Make a chart to determine if

there is a pattern to the behavior:– Time of day– The activity (bathing,

eating, getting into a cab)– Who is present with the

person at the time of the behavior

– Specific location (kitchen, at a party, at the theater)

– Noise level; loud, quiet, etc.

Time of Day

The behavior

What was happening when Behavior Begins

Noise level

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Managing Behavioral Changes 1

• Identify the underlying concern of the Alzheimer’s disease person:

– Fear

– Confusion and disorientation

– Insecurity regarding finances and safety

– Impaired hearing, vision, mobility & taste

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Managing Behavioral Changes 2

• How to respond to the underlying concern:(5 R’s)

– Reassure

– Reorient

– Repeat

– Redirect

– Respect

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Activity Adaptation 1

• Everything that an Alzheimer’s diseaseperson does can be considered an activity; dressing, bathing, eating, etc.

• Dressing: The activity must be broken into steps1. Pick clothes to be worn 2. Give AD person one item at a time3. Use Concise sentences to direct person4. Use Calm voice to direct person5. Assist person if they are disoriented6. Try to keep smiling

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Activity Adaptation 2• Bathing: The activity must be broken into steps:

1. Tell the person it is time for bath/shower2. Set the temperature of the water3. Using a calm voice, concise sentences, tell Alzheimer’s disease (AD) person what you are doing as you do it (“I’m now going to wash your arms, back,” etc.)4. If the AD person is afraid of taking a bath, try to put

on music they enjoy to make a positive association5. Some AD people will do better with a sponge bath6. Consider a bath chair with back, hand held shower and bath rails

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Activity Adaptation 3

Making a sandwich1. Get a plate2. Take out the bread3. Take out the peanut butter4. Take out the jelly5. Get a knife6. Put the bread on the plate7. Open the peanut butter8. Pick up the knife9. Put knife in peanut butter

10. Spread the peanut butter on bread11. Open the jelly12. Put knife in jelly13. Spread the jelly on bread14. Close the sandwich15. Cut the sandwich in half16. Put plate on the table

Preparing lunch: With supervision, this activity can be done by the AD person following some or all of these steps:

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Changes in Mobility• Walking:

-Pace slows, wobbly/shuffling gait, more tentative -Assist/guide person as needed. -Have them wear rubber soled shoes. -Contact MD if you notice a sudden change.

• Depth Perception:(difficulty assessing distances, or if object is 2 or 3 dimensional) - Results in difficulty; sitting, navigating stairs, getting into buses/cars.- May be aggravated by bifocals: contact MD

- Assist/guide person as needed. • Safety at home:

-Safe Return Bracelet-Locks/shut-off switches on appliances, doors-Remove throw rugs-Create evenly lit rooms, reduce glare-Remove clutter-Keep refrigerator filled with fresh food.-grab bars for the bath, bath stool with back

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Being a Caregiver

• Role changes

• Emotional aspect of caregiving

• Physical aspect of caregiving

• Financial aspect of caregiving

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Stress

1. Stress is the way you react to change, physically and mentally.

2. Stress Response – heartbeat increases, breathing becomes rapid and shallow, hormones are released, liver releases stored sugar, senses are heightened, muscles tense, blood flow to digestive organs and extremities is restricted and increased to the brain and major muscles.

3 Stress related complaints

4 Chronic stress has been related to cardiovascular disease, gastrointestinal problems, suppression of immune system, and endocrine changes. It can also make you anxious or depressed.

5 Stress and memory – affects your attention and concentration and reduces your ability to acquire the information that you need to remember.

Mason, LJ Guide to Stress Reduction. Berkeley, CA: Celestial Arts, 1985, p.2

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Relaxation Exercise1. Put on some nice quiet music on (5 minutes in length)

Then sit down in a chair and close your eyes.2 Sit quietly with your feet flat on the ground. 3 Imagine you have a 9ft bubble all around you, above your head,

below your feet, to the right and left.4 Imagine golden bright energy/light entering your back from

somewhere behind. Breathe in and out. Imagine that gold energy filling the 9ft. Bubble around you as you breathe in and out.

5 Keep breathing in and out slowly. Let the gold light warm you (like the sun) and fill the bubble around you.

6 Feel the gold energy taking care, loving you.7 Now, think of the person for whom you are giving care, and

include them in your bubble.

Adapted from Stress by Doug Eisenstark, Today’s Caregiver

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Services Available in the Community

1. Legal/financial planning

2. Home Care

3. Adult Day Care

4. Support Groups

5. Assisted Living Facilities

6. Nursing Home

7. Others Services

Legal/financial Planning

• Durable Power of attorney• Medicaid planning• Guardianship• Legal seminars Free at

Alzheimer’s Association 212-983-0700

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Home Care

• Medicare Home Care - skilled nursing needs; dressing wounds, injection, etc - Time limited

• Medicaid Home Care - up to 24 hours if person meets financial eligibility requirements

• Private Pay – NY Foundation for Senior Citizens 212-962-7559 -Respite Care x 244

Limited to 3 months x year, 6 week waiting list. Pay by the hour ($ 7.25 x hour weekday and 7.50 weekend. Plus a one time daily charge of 5.00 for car fare. Minimum 2 days x week, max 7 days x week. Minimum hrs. day is 4 hours and max x day is 12 hours).

• Geriatric Care Managers 212-222-9163

Adult Day Care

• Designed program for people with memory disorders. The program allows caregivers some time off with the security of knowing that the person they are caring for is receiving care from trained professionals.

• Program range from 3 to 12 hours some are available 7 days a week

• The Memory Tree Program:

– For those in the early stages of AD– 917-656-0558 Elizabeth Fine

• Contact the Alzheimer’s Association: 646.744.2900 www.alznyc.org

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Support Groups & Counseling Services

• Research shows that sharing your feeling with others helps caregivers to better cope and delay in the institutionalization of Alzheimer’s disease individuals.

• Mount Sinai Medical Center – Alzheimer’s Disease Assistance Center –– 212- 659-8872- mari.umpierre@mountsinai.org

– HELPS TO EASE THE BURDEN OF ALZHEIMER’S DISEASE FOR PATIENTS AND THEIR CAREGIVERS THROUGH EDUCATION, COUNSELING AND SUPPORT SERVICES IN ENGLISH AND IN SPANISH-

• Alzheimer’s Association: 646.744.2900 – HELPS with locating a therapist familiar with Alzheimer’s Disease

for individual & family counseling.– COORDINATES support groups for caregivers.

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Assisted Living Facilities/Nursing HomeApplying to an Assisted Living Facility:1 Get list a of Assisted Living Facilities that have AD units

www.alznyc.org 212-983-0700NYC Dept for the Aging 212-442-1000www.NewLifeStyles.com 800-869-9549

2 Visit a few facilities to evaluate programs and staffing

Applying to a Nursing home:1 Get list a of N.H. that have AD units

www.alzhnyc.org 212-983-0700NYC Dept for the Aging 212-442-1000www.NewLifeStyles.com 800-869-9549

2 Visit a few N.H.s to evaluate programs and staffing3 When you decide on a NH contact an RN or VNS to have a

Patient Review Instrument (PRI) done – this is valid for 90 days

Other Services

• Benefits Check Up• http://www.benefitscheckup.org/about-us

A free service of the National Council on Aging (NCOA).– There are over 2,000 federal, state and private benefits programs

available to help. But many people don’t know these programs exist or how they can apply.

– Benefits Check Up asks a series of questions to help identify benefits that could save you money and cover the costs of everyday expenses. After answering the questions, you will get a report created just for you that describes the programs you may get help from. You can apply for many of the programs online or you can print an application form.

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Other Services • The Memory Tree-

– Elizabeth Fine 917-656-0558• Applying for Medicaid:

-Mt. Sinai Hospital REAP: 212-423-2800-Catholic Charities: 212-371-1000,-JASA- Jewish Association For Services For The Aged - Central Administration Manhattan & Brooklyn: 212-273-5200-SPOP-Senior Program for Older People: 212-787-7120

• SCRIE (rent increase exemption): 212-442-1000

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Other Services • Minna Pollock Respite Fund at Alzheimer’s Association:

212-983-0700• Meals on Wheels: 212-442-1000• Access a Ride: 1-877-337-2017 • Information on Alzheimer’s: www.alzinfo.org• Mount Sinai School of Medicine - Alzheimer’s Disease Research Center

212- 241-8329 http://www.mssm.edu/research/centers/alzheimers-disease-research-center

Is a comprehensive research facility and clinical program dedicated to the study and treatment of both normal aging and Alzheimer's disease. Clinical research programs are available to those with Alzheimer's disease, as well as to healthy seniors. The Center is supported by the National Institute on Aging, a branch of the National Institutes of Health. All services are available in both English and Spanish.