Understanding Young-Onset Dementia

 ”Memory Matters” for ALL Ages  PROGRAM LINK

When a person is under 65 years of age and experiencing memory problems, there is often a concern it might be Alzheimer’s disease. Being proactive means understanding the changes, what they might mean, learning helpful strategies and connecting with appropriate resources for further assessment.

Those with a diagnosis of young-onset dementia are often still working or volunteering, have a working partner, have children at home or are helping with the care of grandchildren.   There are many resources for those older adults with Alzheimer’s disease or a related dementia. Then there is the challenge when it comes to navigating the health care system for those diagnosed with young-onset dementia.

Some things to think about:

1. Early onset Alzheimer’s disease, designated by its incidence in those who are under the age of 65, afflicts about 200,000 Americans or about 5 percent of the estimated four million who suffer from Alzheimer’s disease.

2. Frequent complaints of difficulties might include trouble handling too many tasks at the same time or an inability or increased disinterest in handling updates with electronics. Sometimes there is just an overall increased frustration when subjected to multitasking or new learning. Often contributing to this feeling of being overwhelmed is the increased pace of the 21st century when trying to work and handle personal responsibilities.  Some of my clients say they are feeling more overall fatigue at the end of a hectic day while others note  getting lost in familiar places. With downsizing and increased responsibilities, a person may find their previous memory strategies are not working for them or may be unable to create more effective ones as they had done previously.

3.  It is important to understand that there is an impact on the children and grandchildren. If a person is in charge of their daily routines with multiple responsibilities, there are many areas where decision making and problem solving may need some eventual input and supervision by concerned people in their support system. In addition, helping the younger family members to begin to understand some of the changes that are occurring will eventually be needed as well as ways to assist and be supportive.

The “Memory Matters” for ALL Ages blog series and Cable TV shows offer some important information for consideration in all of these areas as well as suggested resources. Once there is a diagnosis of young-onset dementia, long term planning for safety and strategies as well as activity modification needs to become a priority.
One of the advantages of someone in the earlier stages consulting a speech-language pathologist is guidance can be offered when it comes to appropriate strategies as well as ongoing support. The focus when creating a plan means meeting the person where they are and educating friends and family members for possible upcoming modification needs.

 Tips to consider:

1. Do not delay making a plan once there is a diagnosis. Work with your physician and seek out other health care professionals who have experience in this area and are willing to connect you with resources during the various stages so that quality of life can be maximized for all involved.

2. In some cases there may be an opportunity to work with an employer so that duties can be modified, schedules revised or locations rearranged to minimize distractions. In some cases, early retirement might be an option. This also applies to those who may be in a volunteer position. One of my recent clients was a very active in many organizations and felt with her memory difficulties and the stress of being in charge with multiple duties was more than she cared to handle now. Since she still wanted to maintain some of her connections, it was suggested she pick the one organization where she wanted to stay involved and she resigned from her officer responsibilities but offered to assist with projects.

3. Create a consistent daily routine and continuously monitor distractions and interruptions. If you are part of the person’s support system, with their permission, help others to better understand what strategies might be helpful. If clutter seems to be increasing, helping to keep things sorted out can be a possibility but has to be done step by step with the person involved. It is important that their current system not be reorganized without their input.  Some of the information in the multitasking blog/TV shows may provide some additional helpful insights.

4. Staying connected with others is important for the person with young-onset dementia. For many decades my primary caseload was stroke patients and they often observed that friends were around at first but when communication was not what it used to be people stopped coming around.  Whatever the reasons for others staying away or decreasing contact, it may be necessary for friends and family members to plan some periodic informal small group gatherings that are relaxing and geared to the person’s interest. The pace and complexity may need to be less hectic, but that does not mean it cannot be an enjoyable experience. Meeting the person at their comfort level makes all the difference.  Assess the situation later to help guide you in making future plans.

5. Another consideration is to contact your local Alzheimer’s Association for information on young-onset support groups. In some cases counseling for all involved may be beneficial in these early stages to help navigate the road ahead while dealing with the emotions a change in everyone’s life brings about. Not everyone is comfortable with that strategy. Some of my clients prefer to read more on this topic. One of the books I found interesting was Jan’s Story by Barry Peterson when it comes to understanding the progression of the disease.  Another one is a novel, Still Alice, by Lisa Genova which I found helpful when explaining many of the changes and family challenges in understanding and modifying their approach. As a speech-language pathologist, it is very rewarding when I have the opportunity to share information,  offer support and personalize strategies. A proactive approach with pertinent recommendations offers all involved the ability to give support based on a better understanding of what is most beneficial.

 6. With technology changing so quickly, this younger group has been used to updating their equipment and probably has been using it for a significant number of situations. Watch before upgrading electronic devices, home phones, and appliances even buying a newer car. In some case simplified but detailed step by step instructions may be helpful when making a change. It is better to have them written out so it can be easily followed. If there are a lot of challenges, it may be necessary to go back to what the person was using before.

7. In an upcoming program there will be a Cable TV show discussing the option of creating a Lifestyle Care Plan along with a corresponding blog and links to more details. If you were in the care of another person, would they know your personal preferences regarding your daily care? A lifestyle care plan will provide information others need to know in the event that you are unable to communicate effectively what matters the most. 


There can be such a fear factor underlying a diagnosis of Alzheimer’s disease.  Just because someone in family had that diagnosis does not mean it is inevitable that others will.  There are over 100 reversible causes of memory loss and rather than be immobilized by worry, be proactive. Seek out the expertise of a your doctor or a specialist in geriatrics, and consider a complete physical and/or a  geriatric assessment This entire series was created as one of many resources to increase your understanding and help you to seek out appropriate resources.

“Doing the best at this moment puts you in the best place for the next moment.” Oprah Winfrey

Information on Kathryn’s products and links to sample pages.   
Kathryn is available for private consultations as well as educational and training programs.

About Kathryn Kilpatrick

Kathryn Kilpatrick received her Master's degree in Speech-Language Pathology in 1968 from the University of Massachusetts. She has worked in a variety of settings, primarily in Ohio, including hospitals, rehabilitation centers, and for decades in the area of home health care. Kathryn is president of Memory Fitness Matters (www.memoryfitnessmatters.com) and Communication Connection(www.connectionsincommunication.com). She offers memory coaching for all ages and has a geriatric consulting practice. She is a national motivational speaker and author of more than 30 products to enhance communication and connection as well as a Memory Fitness Toolkit. Kathryn brings her decades of experience as a speech-language pathologist to all those wanting to enhance their quality of life, particularly when there are communication, memory and cognitive challenges. Her websites offer information on a wide variety of topics related to elder care concerns as well as memory fitness and successful aging.
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