The Alzheimer's / Dementia Support Center

The Journey:
Just Found Out
Dealing With It
Recover & Thrive
Worst Case

Facing the Initial Impact of Alzheimer's / Dementia

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Every person is unique, but when you face a challenge like Alzheimer's disease or dementia, you are never alone.  Countless men and women have faced exactly the same diagnosis. The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.  

TSC has scoured the Web to assemble links to the very best Alzheimer's and dementia resources: articles, blogs, forums, and tools that can help you make better decisions and take action to overcome the range of physical, emotional, and other challenges you're facing now.

As you’ll see, we always welcome your ideas and suggestions to make this Alzheimer's disease and dementia guide even more helpful to survivors like you. 

JUST FOUND OUT

Survivors Say: Best Resources for Alzheimer’s and Dementia

The Big Picture

Alzheimer's disease is the most common form of dementia among older people. Dementia is a brain disorder that seriously affects a person's ability to carry out daily activities.

Do you know how to recognize Alzheimer's or dementia?

Diagnosis can be difficult with Alzheimer's:

Alzheimer's Association: Steps to Diagnosis

The Alzheimer's Foundation of America offers assistance to people just receiving a diagnosis of Alzheimer's:

Alzheimer's Foundation of America  

Your Alzheimer’s and Dementia

One of the things you'll need to determine with your doctor is what stage of Alzheimer's you are at:

Alzheimer's Association: Stages of Alzheimer's

Your World

Most of the risk factors for Alzheimer's and dementia are beyond anyone's control, so you should not feel responsible for your diagnosis:

Alzheimer's Association: Risk Factors

The news that you have Alzheimer's disease or dementia has likely hit you hard -- that's normal. Take time to talk through your diagnosis with those closest to you. You will need all the support you can find now, and the Alzheimer's Association has excellent resources in most parts of the U.S.:

Alzheimer's Association: In My Community

Alzheimer's Disease Myths

Find out the truth about these and other misconceptions at: Alzheimer's Association: Alzheimer Myths

Dealing With Alzheimer's / Dementia

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Information and Recommended Links for Survivors

Types of Treatment

Alzheimer’s is not curable, nor can doctors stop its progression. But medication is commonly used to treat cognitive (thinking, planning, language) problems, and behavioral therapies may make it easier for patients and caregivers to deal with behavioral changes. 

Alzheimer's Association: Standard Treatments

Medication

Cholinesterase inhibitors are a type of drug that works to stop an enzyme in the brain that breaks down brain cells. This breakdown of cells is what causes the plaques and tangles in the brain that cause Alzheimer’s:

Yahoo! Health: Cholinesterase inhibitors for Alzheimer's disease

Namenda (memantine) is a medication that regulates the amount of a chemical called glutamate that controls how the brain processes information, which in turn can help patients improve their quality of life:

About.com: Alzheimer's Disease - Alzheimer's Treatment

Non-drug Treatments

As Alzheimer's progresses your behavior may change dramatically, resulting in more aggression, repetitive behaviors, agitation, confusion, sleeplessness, and wandering, among other changes:

New Therapies

Alzheimer's and dementia are such devastating diseases, for patients and their caregivers, that they are the study of much research to better manage this condition. Check these resources to find out more about the latest thinking in diagnosing, preventing and treating Alzheimer's and dementia:

Holistic Treatments 

Could supplements help the brain and ward off or cure Alzheimer's or demential patients? That's not clear, but it does seem that omega-3 fatty acids are important to healthy brain functioning, and some herbs such as gingko biloba may improve memory:

Creating a Support Circle

  • Set up your TSC survivor profile.
  • Join support groups of other survivors or start your own.
  • Interact and provide updates on your TSC profile or in the TSC forums.

Health Insurance, Work & Money Matters

Health Insurance Matters

Money Matters

Health-care Providers Who Can Help

Your primary care physician is likely to be the first doctor you see, the one who diagnoses dementia or Alzheimer's. Since Alzheimer's is often a slow-progressing disease, you may continue to see your regular doctor for a long time, though a neurologist can help too.

Resources to Find Doctors

The Emotional Rollercoaster

One key to surviving with Alzheimer's and dementia is to try to continue living your life as you always have, as much as is possible. In short, some days will be better than others, but eventually you will need help and those caring for you will need assistance as well. This prospect can be a very depressing and disheartening one. Know that you are not alone - talking to others who are where you are can help:

Books Survivors Recommend

What Survivors Wish They’d Known

Communicating with Your Health-care Providers

  • Ask your health-care provider for an honest prognosis;  you will need to know how quickly you should expect to begin making plans for someone to care for you and understand the likely progression of the disease based on the stage you're at now.
  • Ask what signs you should look for in the coming weeks and months. Your doctor should be letting you know what signifies a worsening of your symptoms.
  • Ask a family member to attend your doctor visits with you to help you remember what was said and to ask questions you may not have thought of.

Dealing with Alzheimer’s & Dementia: Information and Recommended Links for Co-Survivors

Caregivers are an extremely important part of the life of most Alzheimer’s patients; learn ways to be a good caregiver if someone you love has been diagnosed:

Alzheimer's Association: Coping

The stress on those who care for people with Alzheimer’s disease and dementia can be overwhelming and burn-out is common. Be sure you get help for yourself to stay healthy and find some balance amid the demands of caring for your loved one:

How You Can Help

  • Confide in those you trust - don't try to carry the burden of Alzheimer's or dementia for yourself and the person you love.
  • Schedule regular breaks to do something you enjoy, even if it's just for a short while. Caregiver burnout is common, and is something to strive to avoid.
  • Ask your family member or friend how you can help them remember things better (by taking notes, for example), or otherwise help compensate for the symptoms of Alzheimer's/dementia, especially in the early stages of the disease.

 What to Say  

  • "New treatments are being developed every day.”
  • "If you think you need help with remembering things, let me know."
  • "If you want to do puzzles, play games, or join a book club together, let me know."

 What Not to Say

  • "We’ll make sure you don’t forget anything."  
  • "This is just a part of getting older."
  • "You'd better not forget me.”

Things You Can Do for a Survivor Every Day

People suffering from Alzheimer’s and other forms of dementia need to know that you’ll be there for them; they are likely to be terrified at the idea of losing their memory and the sense of who they are. Avoid making any comments about their behavior or forgetfulness that can be seen as hurtful. Offer to help with daily tasks if needed and, in the disease's early stages, you might suggest going to a class or another activity that will engage their mind and memory.

How to Build a Support Network

  • Set up your TSC co-survivor profile.
  • Create a support group for your friend or family member.
  • Interact and provide updates on how your loved one is doing.

How to Help a Survivor Deal with Day-to-day Challenges

Recover & Thrive

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Recovery / Recurrence

Alzheimer's and dementia are progressive diseases, so they will get worse over time. Especially in the early stages of the disease, though, there are things you can do to take care of yourself and to prepare those around you for future changes:

Worst Case

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In Alzheimer's final stages the individual has lost the ability to speak or control their own movements and they require help eating and going to the bathroom. According to the Alzheimer's Foundation the disease is the sixth-leading cause of death in the U.S.

If you or someone you love has reached the last stages of Alzheimer's or dementia, these resources may offer help as you plan, prepare, and cope during this very difficult time:

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Famous Alzheimer's / Dementia Survivors

  • Charles Bronson, actor
  • Terry Pratchett, novelist
  • Ronald Reagan, U.S. President