Hearing the news that someone you love has dementia is tough. But the good news is that a lot can still be done to keep your loved one sharp and in high spirits. Though the diagnosis can feel like the end of the world, in most cases, the day of the official news marks the beginning of getting help and finding answers.
Facing the News
Our understanding of how to live with Alzheimer’s or dementia, as well as ways to manage the symptoms, has advanced quickly over the past ten years. We now have resources and strategies available to make this journey easier on everyone, and the science continues to progress.
The diagnosis can trigger fear and anxiety, but can also allow for greater clarity and a renewed focus on solutions and support.
Aging loved one visiting with family members.
It’s worth knowing that instances of Alzheimer’s and dementia across the world are increasing, with a staggering 10 million new cases each year, and a critical fight rages on to develop innovative new treatments and find answers.
Partnerships among scientists working to develop new drugs have expanded in recent years, as has the search for re-purposed drugs already approved by the FDA that might aid in the treatment of Alzheimer’s. There are currently over 126 drugs in clinical development, all with the goal of slowing, stopping, or even reversing the progression of this disease.
Grown daughter hugging her aging mother.
Many people who receive an Alzheimer’s or dementia diagnosis have been living with symptoms they may not have understood, managing them on their own for years, while caregivers like you have felt increasingly helpless. The diagnosis can trigger a time of fear and anxiety, for sure, but this can also become an opportunity for greater clarity and a renewed focus on solutions and support.
Talking Through the Diagnosis
It’s common for family members of someone diagnosed with Alzheimer’s disease to want to protect their loved one from hearing the news. While mental health professionals agree that honesty about this diagnosis is important, your worries are completely natural and understandable. All of us would shelter those we love from harm if we could. Your loved one who is affected may not fully grasp the situation at times, and communication can be challenging.
Recently diagnosed loved one sitting in her favorite chair.
Providing hope, a positive but realistic attitude, and the highest quality information you can find is the best thing you can do at this stage. The question becomes not “Should we tell them?” but “How do we talk about this now that they know?”
Here are best practices for discussing this painful subject with your loved one in the most productive and loving way possible:
Educate yourself so you’re aware of real solutions:
An important coping mechanism and overall strategy for dealing with the diagnosis is to educate yourself about dementia. Dementia refers to a syndrome marked by the decline of cognitive function, and Alzheimer’s disease is the most common type of dementia.
Understanding how the disease progresses, its effects on the brain, and the way its symptoms manifest differently in different people should help you adjust expectations and prepare for challenges as they come. Discussing the disease with your loved one in light of the best information you have, and sharing information that’s helpful for them to know, can empower you both going forward.
Be honest and realistic but focus on available strategies:
Rather than getting caught up in the obvious difficulties that this disease brings with it, try to steer your focus toward the productive measures that can be taken to help your loved one manage.
Find information that leads you to solution-oriented steps and discuss those with your loved one whenever possible. You don’t want to deny the fears and struggles that you’re both dealing with, but you can insert positive messages related to helpful strategies that others in your shoes have used to make daily life easier.
Stress your togetherness:
In any discussion of the diagnosis and the future, when you speak in inclusive terms using the pronoun, “we,” you let your family member know they’re not alone. In difficult times, that language of togetherness can be a powerful tonic against the inevitable uncertainties. Use it often and remind your loved one of your dedication to them now and in the future.
Find and discuss avenues of support:
It can be helpful to see the health-care professionals who will now become a part of your daily life as members of your team. Framing the discussion related to nurses, doctors, pharmacists, and other practitioners as team members from the beginning can set a positive tone of hope and encouragement.
Discuss others who will be on your side come what may, such as other family members, friends, church families, support group members, neighbors, and professional caregivers. Generate the feeling of being surrounded by support now and continue to grow your team in the days ahead.
Plan difficult next steps, like formalizing legal documents:
Soon you’ll want to face down this hurdle and have critical documents, such as a power of attorney and a living-will, finalized and signed. Getting this step behind you can provide peace of mind and free up your energies to create quality experiences and enjoy your time together without the added worry of legal loose ends.
Don’t be ashamed to feel hopeful:
Sometimes family members try too hard to sound realistic and discipline themselves against speaking in hopeful terms. Realize that hopefulness, even in the face of devastating news, has real psychological benefits. If you have a naturally optimistic nature, research has shown that you’re actually more likely to tackle problems head on and develop successful coping mechanisms. When discussing the diagnosis with your family member, don’t feel the need to suppress your natural optimism when it comes up. Let your true personality shine.
Spending time with dad.
Here are a few possible next steps in this journey that those who have walked before you found helpful:
Developing a routine and maintaining consistency in your loved one’s life will enhance their daily functioning going forward and greatly help to ease anxiety. This can be a very positive first step to take once you’ve processed the news. Creating a calendar of doctor’s appointments, social activities, and upcoming commitments, in whatever form best suits you both will set you up for success.
Schedule outings that fall on different days around the same time of day, and develop a daily schedule that you’ll be able to keep in place regardless of doctor’s appointments or other interruptions. Posting a daily and weekly schedule in a visible spot in the house can help. Many find whiteboards useful for this.
Find memory aids that work:
You’ll find a host of memory aids on the web. Different types of aids that will appeal to different people. Take time to experiment and find the aids that work best for your loved one. Introducing new electronic apps or teaching new skills can be too overwhelming at this time, so try to stick with memory aids that won’t bring added frustration. Simplify whenever possible.
Organizational tools and planners that keep contact details handy, list makers, and a calendar clock that shows the day and date as well as the time, will all prove useful. Visual aids and picture labels for putting possessions away in drawers and cabinets, and later retrieving them, can take time to create. But, they will pay off in the long run.
Use memory aids to keep your loved one sharp.
Avoid excessive correcting:
Research shows that arguing with a family member who has dementia will be unproductive and ultimately cause you undue frustration. Try to avoid wearing yourself out and stressing your relationship with your loved one by pointing out every lapse of reason or mistake, even when your intentions are loving. Unfortunately, this is challenging, especially when issues of basic safety arise. Don’t beat yourself up when you catch yourself arguing, but gently redirect your energies whenever possible.
Schedule breaks for yourself and seek support:
Anyone who has cared for a family member with Alzheimer’s or dementia will tell you that breaks are a vital component to maintaining your own health and wellbeing. Building breaks for yourself into your schedule will become the best way to ensure you get the necessary R&R.
Take advantage of the power of writing things down on a schedule and seek support groups in your area to attend on a regular basis. The relationships formed in these groups are often invaluable, and if it becomes necessary, many of them offer respite care for your family member while the group meets.
Resources for Caregivers
When you’re ready, you’ll find a wealth of resources for caregivers both on- and off-line. Besides the support groups mentioned above, you’ll find some wonderful books written for family members of Alzheimer’s patients such as Marie Marley’s Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy, which can encourage and uplift you.
Caregiver support can make it easier to provide the best care.
The Alzheimer’s Drug Discovery Foundation’s Cognitive Vitality blog offers up-to-date information on the latest research and cognitive strategies.
The Alzheimer's Association also offers a plethora of information on its website, a national online support group called ALZConnected, and a Nationwide Helpline (800-272-3900) which is available 24 hours a day, 7 days a week for information and support.
Realize that ultimately you can make a great deal of difference in your family member’s experience and mindset as you navigate this journey together. Above all, stay healthy, stay connected, and remember that you’re not alone.
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