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 most common form of dementia, is the sixth leading cause of death in the United States.
Every diagnosis of dementia affects not only the individual, but also his entire supply network – emotionally, relationally, financially and in a variety of ways, says Ruth Drew, licensed specialist consultant and head of information and support services at the Alzheimer's Disease Association.
The most important message that a counselor can convey to these clients – be it someone with dementia or the family or caregiver of someone with dementia – is that they are not alone, says Drew, who is the 24-hour hotline of the Alzheimer's Association.
Counseling Today, Drew emailed some questions to get her perspective.
[Note: Some responses have been edited slightly for purposes of length or clarity.]
What should counselors know about some of the common fears, challenges, and questions associated with dementia, and how can they assist clients with these challenges in counseling sessions?
Alzheimer's disease is a progressive brain disease that worsens over time. There are currently no drugs that can cure, prevent, or slow the disease – only drugs that help with symptoms. Getting an Alzheimer's diagnosis is life-changing and affects the entire family. The diagnosis and course of the disease are accompanied by a wide range of emotions – fear, resentment, despair, anger, denial, relief. Many families therefore often feel lost and isolated after diagnosis. This isolation can increase as the journey progresses as care requirements tighten – especially when they don't know who to contact for help.
We want everyone to know that nobody should be confronted with this disease alone and nobody has to. There's so much information and support around the clock, and it's just a phone call or click away from the Alzheimer Helpline (800-272-3900) and the website at alz.org.
Counselors can help people with dementia by recognizing that it is normal to experience a wide range of emotions. Getting information and support is an important first step in overcoming the challenges ahead.
What kind of help does the Alzheimer Association helpline offer?
Our free, 24-hour helpline receives more than 300,000 calls a year, answered by specialists and clinicians at master's level, providing information on diseases, care strategies, local programs and resources, crisis relief, and emotional support.
Ruth Drew, LPC, director of information and support services at the Alzheimer Society.
If a caller is concerned about signs of memory loss, we will let you know about the warning signs of the disease, how to get in touch with the person [showing signs of memory loss]and how to find a diagnosis. If a person has recently been diagnosed, we can answer their questions and provide a safe place to process their feelings and learn more about the peer support that is available. When a caregiver is exhausted, grieved, and burned out, we can listen, normalize their experiences, and help them find the support and resources they need for themselves and the person they are caring for.
We advocate a person-centered approach to care and help families find out how to deal with Alzheimer's based on their particular circumstances. This can include connecting people with local Alzheimer's education programs, support groups, and early-stage engagement programs offered by our chapters across the country.
What aids do you recommend in addition to counseling for people with dementia and their caregivers and relatives?
Alzheimer's can last for many years, so people need different resources and levels of support in the course of the disease. Regardless of whether you are the person living with the disease or a family member [whether you are]the first step is to find out 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 to make plans for the future.
When you get support from the people you care about and make plans for the future, you can support steps that families can make the most of their time now and avoid a crisis later. The Alzheimer's Association offers a range of educational programs in local communities across the country that help people understand what to expect, prepare for the upcoming changes and challenges, and live well for as long as possible. We also offer free online training, from education about illness to planning for the future.
In difficult times, a good support network [they] can help individuals to feel socially connected and to belong and be targeted. If you get in touch with other people in the same situation – regardless of whether they have the disease or are a caregiver – you can help put their own experience of the disease in perspective and give them support and encouragement to give that they need. The Alzheimer's Association also offers local personal support groups and an online support community.
What would you like to highlight for advisors to recommend to their customers? Does something come to your mind that you may not know about?
One thing we always want to draw your attention to is the free 24/7 helpline of the Alzheimer Society (800-272-3900). It is available 365 days a year in over 200 languages for anyone who needs information, advice and support – regardless of whether it is a person living with the disease, their caregivers, specialists, universities or the general public , Trained personnel are ready to listen and are provided with information to provide recommendations on local community programs and services, illness education, crisis relief and emotional support.
Are there any assumptions or misunderstandings that counselors might have about dementia and Alzheimer's that you would like to clear up?
Sometimes when people imagine a person with Alzheimer's, they imagine a person in the late stage of the disease. Alzheimer's is often very slow and people can live four, eight or even 20 years after the symptoms appear. The range and variety of symptoms is enormous, and many people can spend a long time in a supportive environment with the family and their activities.
Caregivers often tell me that everyone asks about the person with the disease, but nobody asks them how they are doing. The data show that physical and mental care for people with Alzheimer's disease is much more demanding than with other types of care. It is therefore vital to ensure that the caregiver is well supported.
Family members often face grief and loss while caring for someone with the disease. They mourn every loss of skills and memory, as well as the losses to be expected. Symptoms of stress, depression, and anxiety can be associated with this ongoing loss.
Our readers are professional advisors of all types and disciplines (including doctoral students). Are there some key takeaways you want to share with others?
Dementia patients need understanding, information and support. Every situation is unique. The more you know about the disease, the better you can connect with each person and create a therapeutic environment where they can get the help they need.
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The Alzheimer's Association has a wealth of information about dementia and Alzheimer's, including nuances of diagnosis and resources for living with or caring for a diagnosed person. Call the association's 24/7 hotline at 800-272-3900 or visit alz.org
You can find detailed information on supporting patients with dementia as well as their families and caregivers in the title article "Dealing with the Reality of Dementia", which is published today in January.
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