What

Next? Happens

A booklet about being diagnosed with

Alzheimer’s disease or a related disorder

Created for you by others with a diagnosis of dementia

i

Table of Contents

Introduction . . . . . . . . . . . . . . . . . . . . iii

How We Reacted to Our Diagnosis . . 1

Limitations . . . . . . . . . . . . . . . . . . . . . 2

Fighting Spirit . . . . . . . . . . . . . . . . . . . 3

Ways to Cope . . . . . . . . . . . . . . . . . . . 4

How to Tell Family and Friends . . . . . 5

What to Expect . . . . . . . . . . . . . . . . . . 6

Our Experience with Doctors . . . . . . 7

For More Information . . . . . . . . . . . . . 8

A booklet about being diagnosed with 

Alzheimer’s disease or a related disorder

Created for you by others with a 

diagnosis of dementia

What

Happens

Next?
Flowers Illustration by Syd
iii

As Americans live longer, 

more of us will develop 

dementia in our older 

years. New knowledge and 

techniques are helping 

doctors detect signs of the 

disease earlier than ever 

before. An earlier diagnosis 

gives people with the 

disease and their families 

more time to get the right 

treatment and to plan for 

the future.

More and more resources 

are available to help people 

with early-stage dementia cope with their feelings and the 

practical aspects of everyday life. Early-stage support groups 

are one of these resources. Joining an early-stage support group 

can help you and your family learn about the disease and get 

useful advice about living with dementia. A support group also 

can connect you with others in similar situations and enable 

you to confront the anxiety, sadness, anger, or fear that you 

might be experiencing.

This booklet was developed by the early-stage support group 

at the Northwestern University Alzheimer’s Disease Center in 

Chicago. The authors chose to share their thoughts and feelings 

because they wanted to help others who also are facing the 

beginning stages of dementia. Here, you’ll find firsthand views 

about a diagnosis, what to expect, how to talk with others 

about the disease, and more. You’ll also find a list of helpful 

organizations that offer written materials about dementia, 

information about support groups and services, and ways to get 

involved in research that may help others in the future.

Introduction

Tree Illustration by Jenny
iv

Our goal in publishing this booklet is to offer encouragement to 

those who have been diagnosed with early-stage dementia and 

to let you know that you are not alone. We also hope to help 

empower you to stay active in your care and decision making, 

just as the support group members quoted here have done. 

Finally, we encourage you to try to keep a positive outlook 

and to stay engaged in family and social activities, hobbies and 

pastimes, and creative interests that you can continue to enjoy. 

In doing so, you can take an active role in making the years 

ahead as rich and fulfilling as possible, despite the challenges. 

Introduction (continued)
1

How We Reacted 

to Our Diagnosis

Everybody is unique, and 

this news has different 

meanings for everyone. 

These are some of our 

first reactions, and some 

advice about how to deal 

with the news:

“The first thing you should know is that it’s not that 

bad. Everybody thinks it’s horrible, but it’s not that 

bad.” - Les

“I got the diagnosis and I thought I was going to die, 

then I thought I might not.” - Les

“Not being sure of my diagnosis... I was so scared.... I 

didn’t know which way to go.” - Evelyn

“Dementia... I hate that term.” - Elizabeth

“Don’t overreact. Get support. Try to avoid getting sick 

with worry.” - Elizabeth

“This is a major attack on your confidence. You think 

‘This isn’t fair, why me?’ It helps to talk to others who 

are going through the same thing—to understand 

how they are experiencing it.” - Gerrit

“So you have Alzheimer’s. Let’s talk about it.” - Les
2

Limitations

There’s no denying it, 

dementia—even in its 

early stages—is going 

to stop you from doing 

certain things. This is 

how we felt:

“Some of the simple things I used to do in the past, I 

just can’t do.” - Gerrit

“I want to do something and I can’t. I want something

I can do.” - Evelyn

“Sometimes it’s good to forget about what limits you 

and find something else to do.” - Les

“My golf game is gone, mostly because of physical 

limitations.” - Gerrit

“I used to run 3 or 4 times a week and now I can’t. I 

miss it. The legs just aren’t what they used to be.” - Al

“Being told you should not drive is the first thing 

everyone thinks is terrible.” - Les
3

Fighting Spirit

Many of us feel that 

keeping up a fight 

and staying hopeful 

helps us to cope and 

stops the disease from 

slowing us down as 

much as it could:

“I’m fighting it [accepting my diagnosis]. Deep down I 

know I’m wrong, but I’m still fighting it.” - Al 

“You can keep fighting it.” - Les 

“That doesn’t mean I’m going 

to win.” - Al

“If you can’t cope with it, you’re going to be depressed.

You have to keep positive, or you’re going to be 

crawling under the covers.” - Elizabeth

“I test myself to make sure I can still do things right. I 

pass, I flunk. But I’m fighting it.” - Al

“You either face it and fight it, or give up.” - Al

“It may be an uphill climb but you just do

it anyways.” - Elizabeth

“We are all early -stage and we are all going to be 

late-stage, but I’m not going to moan and groan on the 

way there. You have to live your life.” - Sydnee
4

Ways to Cope

Being diagnosed with 

dementia will create some 

changes. These are some of 

the ways that we cope:

“I’ve absorbed my diagnosis into part of who I am. It’s not 

as important to me now that I’ve come to terms with it.

Getting over that hurdle is the hardest part.” - Jenny

“Changes happen. They can be good changes. I 

was never a helping person, now I have learned 

to help others.” - Les

“Laughter is the best 

medicine.” - Jenny

“I find that keeping busy 

is terribly important. You 

have to keep looking 

forward.” - Jenny

“I’m still me with 

kinks.” - Joan 

“After all, a kink is just a 

twist. It’s not a

horrendous thing.” - Jenny

“I have found it extremely 

positive to find out as much as I can about 

others who are affected.” - Jenny

“I’m going to have to make the best of this, and that’s 

what I’m doing.” - Elizabeth

“Activity is the best thing.” - Les

More on coping:

Some of the activities that we 

do to help us relax and get a 

break from stress include:

• Gardening

• Spending time with pets

• Going out with

friends and family

• Volunteering

• Getting fresh air 

and exercise

• Listening to music
5

How to Tell 

Family and Friends

Once you’ve gotten used to the idea 

of your diagnosis, you may want to 

start letting those close to you know. 

This can be difficult. Here are some 

of our thoughts:

“I’ve been selective in letting people know.

Certain people will not do the right thing 

with the information. Some people don’t know how to talk to you 

anymore. They are afraid of the ‘weird things’ that may happen 

to you. It’s a problem. But certainly my direct family and friends 

know. You get all sorts of questions. Your kids have a very healthy 

way of looking at it. They know you have to cope. I don’t know if 

my grandchildren know. I left that up to my daughters.” - Gerrit

“They recognize that I have some kind of disease. They are very 

understanding and accepting.” - Les

“Denial keeps you from telling many people. Being part of the 

support group has helped me become more comfortable and 

talk about my diagnosis. Some of my friends still don’t believe 

me because I don’t fit into their idea of what AD looks like. 

They don’t think there’s anything wrong with me.” - Gerrit

“It took me a while to tell people because I was in denial. But 

then I wanted to start helping people with the diagnosis, so I 

started talking about my diagnosis more.” - Les

“I’ve stopped telling people if it’s not necessary.” - Gerrit

“The people you tell first are the ones you’ve shared a lot 

with. If you don’t know them well, then why would you talk 

about it?” - Elizabeth

“There are people I don’t see often. They don’t see me 

change.” - Gerrit
6

What to Expect

It’s difficult to predict 

how you may feel 

after you hear about 

your diagnosis:

“After a while it mellows.

After a point it doesn’t 

bother me. You realize you can live for quite a while 

and that you can have a decent life.” - Les

“Depression, it’s ok to feel this in the beginning.” - Les

“You are going to be shaken out of your 

boots.” - Elizabeth

“It’s not uncommon to go into denial.” - Elizabeth

“There’s nothing wrong with being angry 

sometimes.” - Elizabeth

“This is a major attack on your confidence. You think 

‘This isn’t fair! Why me?’ It helps to talk to others who 

are going through the same thing to understand how 

they are experiencing it.” - Gerrit

“You still have a fairly long life. Let’s do something fun 

about it!” - Les

“Since my diagnosis, I want to help others more.” - Les
7

Our Experience 

with Doctors

Your relationship with your doctor is 

very important. Here are 

some of our experiences:

“They often go too fast so I try and ask 

them to slow down.” - Les 

“I am very satisfied with my doctor. He 

speaks everybody’s language and takes 

time to meet with 

me.” - Gerrit

“I have a very good team of 

doctors and it’s worked out 

well.” - Sydnee

“I have a partner who has 

the courage to ask the 

questions that need to be 

asked.” - Gerrit

“I make the doctor tell me 

everything I need to know.

I won’t let him leave before 

I’m done.” - Les 

“I go into my doctor visit 

prepared with things to 

discuss.” - Sydnee

“I trust my doctor so I am 

willing to take his advice 

about medication and 

treatment.” - Gerrit

More about doctor visits:

Taking a family member or 

friend with you when you 

visit the doctor can help 

you feel more confident. He 

or she can help remind you 

about things you planned to 

ask and help you remember 

what the doctor says.

Your relative or friend may 

also want to discuss things 

with your doctor, such as:

• What to expect in the 

future

• Sources of information 

and community services

• How to maintain their 

own well-being
8

For More 

Information

To learn about support 

groups, services, 

research centers, 

clinical trials, and 

publications about AD, 

contact the following:

Alzheimer’s Disease Education and Referral (ADEAR) Center

P.O. Box 8250

Silver Spring, MD 20907-8250

800-438-4380 (toll-free)

www.nia.nih.gov/Alzheimers

A service of the National Institute on Aging, the ADEAR Center 

offers information and publications for families, caregivers, 

and professionals on diagnosis, treatment, patient care, 

caregiver needs, long-term care, education and training, and 

research related to AD. Staff members answer telephone, email, 

and written requests and make referrals to local and national 

resources. The ADEAR website offers free, online publications 

in English and Spanish; email alert and online Connections

newsletter subscriptions; an AD clinical trials database; the AD 

Library database; and more.

Alzheimer’s Association

225 North Michigan Avenue, Suite 1700

Chicago, IL 60601-7633

800-272-3900 (toll-free)

www.alz.org

This nonprofit association supports families and caregivers of 

patients with Alzheimer’s disease and funds research. Chapters 

nationwide provide referrals to local resources and services 

and sponsor support groups and educational programs.

Beach Illustration by Syd
9

Children of Aging Parents 

P.O. Box 167

Richboro, PA 18954

800-227-7294 (toll-free)

www.caps4caregivers.org

This nonprofit group provides information, referrals, 

publications, and conferences for adult children caring for 

their older parents. Caregivers of people with Alzheimer’s 

disease also may find these resources helpful.

Eldercare Locator

800-677-1116 (toll-free)

www.eldercare.gov

This service of the U.S. Administration on Aging provides 

information and referrals to help older people and their 

caregivers locate local support and services.

Family Caregiver Alliance

180 Montgomery Street, Suite 1100 

San Francisco, CA 94104

800-445-8106 (toll-free)

www.caregiver.org 

Family Caregiver Alliance is a nonprofit organization that 

offers support services and information for people caring for 

adults with AD, stroke, traumatic brain injuries, and other 

cognitive disorders.
10

National Institute on Aging Information Center

P.O. Box 8057

Gaithersburg, MD 20898-8057

800-222-2225 (toll-free)

800-222-4225 (TTY/toll-free)

www.nia.nih.gov

To sign up for regular email alerts about new publications 

and other information from the NIA, go to www.nia.nih.gov/

HealthInformation.

Visit NIHSeniorHealth (www.NIHSeniorHealth.gov), a 

senior-friendly website from the National Institute on Aging 

and the National Library of Medicine. This website has 

health information for older adults. Special features make it 

simple to use.

For More Information (continued)

This publication lists non-federal resources in order to provide additional 

information to consumers. The views and content in these resources have not been 

formally approved by the U.S. Department of Health and Human Services (DHHS).

Listing these resources is not an endorsement by HHS or its components.
11

Members of the Northwestern University Alzheimer’s Disease 

Center Early-Stage Support Group meet regularly to provide 

each other with support, companionship, and new ideas for 

coping with the changes they are experiencing. Their desire 

to help others led them to share their experiences and create 

this project. We are grateful for their courage, honesty, and 

contributions of photographs and artwork.

Our thanks also to the support group leaders, Sarah Banks 

and Jennifer Medina, and to Darby Morhardt, MSW, LCSW, 

Northwestern University Alzheimer’s Disease Center for 

developing, organizing, and helping produce this booklet.

Acknowledgements
12

Notes:
Les’s Garden

Elizabeth’s Garden
NIH Publication No: 07-6199

Reprinted October 2008

U.S. Department of Health and Human Services

Public Health Service

National Institutes of Health

National Institute on Aging