The Alzheimer’s Association estimates that 14% of people ages 71 and older in the United States have some form of dementia. Alzheimer’s disease, the cause of the most common form of dementia, is the sixth-leading cause of death in the United States.
Each dementia diagnosis will affect not only the individual but also his or her entire care network – emotionally, relationally, financially and in myriad other ways, says Ruth Drew, a licensed professional counselor and director of information and support services at the Alzheimer’s Association.
The most important message a counselor can give these clients – whether that be an individual with dementia or the family or caregivers of someone with dementia – is that they are not alone, says Drew, who oversees the Alzheimer’s Association’s 24-hour helpline.
Counseling Today sent Drew some questions via email to get her perspective.
[Note: Some responses have been edited slightly for purposes of length or clarity.]
What do you want counselors to know about some of the common fears, challenges and questions that come with dementia and how they can support clients through these challenges in counseling sessions?
Alzheimer’s disease is a progressive brain disease that worsens over time. Currently, there is no medication that can cure, prevent or slow down the disease — only medications that help with symptoms. Receiving an Alzheimer’s diagnosis is life-changing, and it impacts the entire family. Along with the diagnosis and disease journey comes a wide range of emotions — fear, resentment, despair, anger, denial, relief. As a result, many families often feel lost and isolated after the diagnosis. This isolation can increase throughout the journey as caregiving demands intensify — especially if they don’t know where to turn to for help.
We want everyone to know that no one should face this disease alone, and no one has to. There is so much information and support available round the clock, and it is only a phone call or mouse click away through the Alzheimer’s Association Helpline (800-272-3900) and website at alz.org.
Counselors can help people facing dementia by acknowledging that it is normal to experience a wide range of emotions. Getting information and support is an empowering first step in coping with the challenges ahead.
What kind of help does the Alzheimer’s Association Helpline offer?
Our free, 24/7 Helpline receives more than 300,000 calls a year, answered by specialists and master’s-level clinicians who provide disease information, caregiving strategies, local community programs and resources, crisis assistance and emotional support.
If a caller is worried about signs of memory loss, we provide information on the warning signs of the disease, how to approach the conversation with the person [showing signs of memory loss] and how to seek a diagnosis. If a person recently received a diagnosis, we can answer their questions and provide a safe place to process their feelings and learn about the peer support that is available. If a caregiver is exhausted, grieving and feeling burned out, we can listen, normalize their experience, and help them find the support and resources they need for themselves and the person they are caring for.
We advocate for a person-centered caregiving approach and help families figure out how to navigate Alzheimer’s based on their unique set of circumstances. That can include connecting people with local Alzheimer’s Association education programs, support groups and early stage engagement programs offered by our chapters across the country.
In addition to counseling, what resources do you recommend for people with dementia and their caregivers and families?
Alzheimer’s can go on for many years, so people need different resources and levels of support as the disease progresses. Whether you are the person living with the disease or [whether you are] a family member, the first step is to educate yourself about the disease, care strategies and available resources. The second step is to have open conversations with the people who are important in your life and make plans for the future.
Getting support from the people you care about and making plans for the future are empowering steps that can help families make the most of their time now and avoid a crisis later. The Alzheimer’s Association offers a number of education programs in local communities across the country that can help people understand what to expect so they can be prepared to meet the changes and challenges ahead and live well for as long as possible. We also provide free online education courses, from understanding the disease to planning for the future.
Whenever facing difficult times, having a good support network [they] can turn to for advice and encouragement can help individuals feel socially connected and give them a sense of belonging and purpose. Connecting with others going through the same situation — whether they are living with the disease or a caregiver — can help put their own experiences with the disease in perspective and provide them with the support and encouragement they need. The Alzheimer’s Association also offers local face-to-face support groups and an online support community.
What would you like to highlight for counselors to recommend for their clients? Is there anything that comes to mind that they might not be aware of?
One thing we always want people to be aware of is the Alzheimer’s Association free 24/7 Helpline (800-272-3900). It’s available 365 days a year, in over 200 languages, for anyone in need of information, advice and support — whether it is a person living with the disease, their caregivers, professionals, academia or the general public. Trained staff are ready to listen and equipped with information to provide referrals to local community programs and services, disease education, crisis assistance and emotional support.
Are there any assumptions or misconceptions that counselors might have about dementia and Alzheimer’s that you’d like to clear up?
Sometimes when people picture a person with Alzheimer’s, they envision a person in the late stage of the disease. Alzheimer’s often progresses very slowly, and people may live four, eight or even 20 years after the onset of symptoms. The range and variety of symptoms is enormous, and many people can stay very engaged with family and activities of living for a long time in a supportive environment.
Often, caregivers tell me that everyone asks about the person with the disease, but no one asks them how they are doing. The data show that caring for someone with Alzheimer’s is much more arduous physically and emotionally than other types of caregiving, so it is crucial to ensure the caregiver is well supported.
Family members often deal with grief and loss throughout the time they care for someone with the disease. They grieve each loss of ability and memory, as well as anticipating the losses to come. Symptoms of stress, depression and anxiety may be connected to this ongoing loss.
Our readers are professional counselors of all types and specialties (including graduate students). Are there any main takeaways you’d like to share?
People impacted by dementia need understanding, information and support. While each situation is unique, the more you know about the disease, the better able you will be to connect with each person and provide a therapeutic setting where they can get the help they need.
- The Alzheimer’s Association has a wealth of information on dementia and Alzheimer’s disease, including nuances of the diagnoses and resources for living with or caring for a person who has been diagnosed. Call the association’s 24/7 Helpline at 800-272-3900 or visit alz.org
- See Counseling Today’s January cover article, “Dealing with the realities of dementia,” for an in-depth look at helping clients with dementia, as well as their families and caregivers.
Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.