What next steps would you suggest for someone who has just received a diagnosis of Alzheimer’s disease or and related dementias?

Welcome to the inaugural bimonthly “Ask the Expert” forum! AlzPossible partners are pleased to offer this new forum on the website. We get a ton of questions from our live webinars and we are not always able to answer all of them. With the “Ask the Expert” section, we will be taking some of our most popular or frequently asked questions and inviting colleagues to answer them. Reflecting on the AlzPossible mission to provide interdisciplinary information and trainings, we wanted the “Ask the Expert” section to do the same.

For this month’s edition, we are pleased to have a representative from the medical field, the Alzheimer’s Association, and an individual who was recently diagnosed with mild cognitive impairment. Reading through their advice on this month’s topic, you’ll quickly see that our colleagues are unanimous on one aspect: You are not alone. In fact, in Virginia, there are over 97,000 who have been through this, having received a diagnosis of Alzheimer’s disease or a related dementia. We hope that professionals visiting this page will share this with their patients, clients and residents, as well as in their personal lives with friends and family. Together, we can all make sure that Virginia is dementia-capable moving into the future.

If you have a question that you think our colleagues ought to answer, please submit it through the Contact Us section.

 

Charlotte Arbogast


Patti Lacey Patricia Lacey, COO, Alzheimer’s Association Southestern Virginia Chapter, responds:

What would I recommend to someone who just got a diagnosis of Alzheimer’s disease?  The first thing I would say is take a deep breath and realize there is a lot of living left to do and you do not have to do this alone.  Then I would get right down to building a team around me that will carry me through the good and the not so good times to come.  A well-rounded support team and a plan can make a tremendous difference in your future.

Many people only think of the medical team they will need.  Yes, you will need doctors, nurses, even social workers and counselors, but there are so many more you want on your team. Think about legal and financial advisors – to make sure you have the best legal and financial plan you can to get through this with the least amount of burden on your family members.  Connect with family and friends and enlist their support.  Reach out to your house of worship or spiritual home, which can provide support in many ways to you and your family as the disease progresses.

Now is the time to look at and evaluate alternatives to care – companion, home health, day care, assisted living, nursing homes and hospice.  Do not leave it to your family to have to rush and do this in an emergency situation.  Reach out to support organizations, such as the Alzheimer’s Association, the Area Agency on Aging and others for educational programs, support services and more.  Join a support group and network with others who are going through what you are going through.  Having others “in the same boat” that you and your primary care partner are in will be extremely useful to you.

Most of all, do not project everything to the “end result.”  Have short term goals for living and fun.  Many times we get caught up in the difficulties of this disease and forget that there is still life—maybe not exactly as we planned it—but joyful life, there for the living.

 

Paul_TerkeltaubPaul Terkeltaub, Past Co-Managing Partner of The Frieden Agency and recently diagnosed with mild cognitive impairment (MCI), responds:

When hit with this news, the first thing you need to do is accept the diagnosis. It is a devastating blow to your entire life and with just a few simple words, “you have Alzheimer’s” your life is irrevocably changed.  The first thing that you need to do is accept the diagnosis. This may take a day, a week, a month or even a year.  However, once you accept the diagnosis you need to reach out for help. You have to start gathering information. You need to do this to begin to understand what this diagnosis is going to mean to you, your spouse, your family, your friends and your co-workers. Everyone you know is going to be impacted.

My wife and I first reached out to the Alzheimer’s Association and attended an 8 week course called EASE ( Early Alzheimer’s Support and Education ). This course introduced us to nine other couples that were in similar situations and educated all of us about the disease and what to expect.  In addition, we discussed the legal and financial issues we had to start addressing.  This organization made us realize we were not in this alone.  It gave us the support and knowledge to assist us in making career decisions along with how to tell our families and friends what was going on.

The main thing I would tell anyone that is diagnosed with Alzheimer’s or any other type of dementia is to not keep it a secret. Although you think it will be scary to tell people, I can assure you that the more people you tell the more support you will have.

Bob LindsayRobert Lindsay, MD, Retired Geriatrician and Project Consultant for the Institute for Innovations in Caregiving, responds:

The following comments are written with the assumption that a firm and solid diagnosis of Alzheimer’s was made following a thorough and careful workup by a qualified physician working in the memory disorder field.

Initially, following the diagnosis, give yourself a little time to adjust but doing so with the support of family or close friends. Then begin to create an action plan for your future. My comments are suggestions for inclusion in that planning.

Receiving a diagnosis of any serious illness like Alzheimer’s is very difficult. It often elicits wide range of emotions that vary from individual to individual. There are frequently feelings of anger, denial, depression, fear, and resentment. Alzheimer’s will affect you both physically and mentally. You often feel alone and unsure of where to turn or to seek help. It is important to realize from the beginning that YOU ARE NOT ALONE!!!!!!! Your physician, the local Alzheimer’s Association, your family and loved ones are there for you and can help tremendously.

I think that an important initial step is to get help in dealing with and managing ones emotional response to the diagnosis. Share your concerns and feelings with you family physician and your family and loved ones. If none of these are available, then with a trained member of the Alzheimer’s Association. It is also important to remember that your diagnosis will also cause emotional issues in your family and friends and you will want to learn about helping them.

I would schedule an early conference with your primary care physician and include your spouse and children. Ask your Doctor to discuss how the diagnosis was made, what to expect as the disease progresses, what are the treatment options, and what resources are available to assist you and your family to learn more about Alzheimer’s and that will allow you to maximize your living well with this disease. Be sure to allow time for questions by your spouse and your family. At this time you may discuss with the Doctor your level of stress and other feelings and to consider help in the form of counselling . This may involve visits with a family therapist, social worker, psychologist, psychiatrist or other mental health professionals.

The Alzheimer’s Association will prove to be an invaluable resource for information and support. They offer a 24 hour telephone help line and a vast array of superb materials to help your and your family learn about your disease. They also provide their information online at www.alz.org.

As a corollary, I would recommend you consider contacting them about enrolling in one of their excellent educational sessions that are specifically oriented towards early Alzheimer’s patients. These sessions offer you the opportunity to realize again what I mentioned previously YOU ARE NOT ALONE!!!!!!!! At their educational sessions and support group meetings you will have the opportunity to share feelings ideas, and fears with others who like you have this disease. Your spouse and family members are welcome and will enjoy the support that these meetings provide. As with any serious illness do not delay in taking steps to put you’re affairs in order and to convey to your family and loved ones what your wishes are regarding health procedures and heroic measures. This is best done with a living will and by creating a power of attorney. Organize your papers and financial affairs and let family members know where they are to allow access when appropriate.

Since memory is affected with Alzheimer’s, I again emphasize these steps need to be taken promptly. Alzheimer’s will change your life but it can be meaningful and productive and more so if you stay involved in activities and interests you enjoy and continue interactions with friends and loved ones. If you have other chronic medical problems it will be most important to continue regular visits to your primary care physician and to welcome the help others can provide to assist you with managing these conditions

Staying healthy physically by exercising regularly, and socializing with family and friends and participating in activities arranged by the support group has been shown to have a beneficial effect on the quality of one’s life.