Coping with an Alzheimer’s or Dementia Diagnosis

The emotional effects of an Alzheimer’s or dementia diagnosis

“I thought my life was over. I knew about Alzheimer’s but I never thought it could happen to me.”  This sentiment reflects the fear, disbelief, and dismay many people experience after receiving a diagnosis of Alzheimer’s disease or another type of dementia. It’s a life-changing experience that can be deeply distressing—for both you and your loved ones.

If you’ve been diagnosed with dementia, you may feel anger, shock, fear about how your memory and personality may change in the future, or profound sadness and grief at the loss of the life you knew. You may find that a diagnosis has a negative effect on your self-esteem or you feel stigmatized as others start to treat you differently. You may also feel isolated, cut off from even those people closest to you who are unable to understand what you’re going through. Denial or a refusal to accept this is happening can also be common reactions. Some people even feel relief after a diagnosis, glad that they finally know what’s wrong and can plan ahead. Most likely, you’ll experience a mix of these conflicting emotions—sometimes all at once. The emotional turmoil following a diagnosis can even trigger depression or anxiety.

While it’s true that there’s currently no cure for Alzheimer’s or dementia, that doesn’t mean that a diagnosis signals the end of your life or that you’re powerless against the disease. There are treatments available for some symptoms and making lifestyle changes can help slow the progression of the disease, delay the onset of more debilitating symptoms, and preserve your way of life for longer.

Facing an Alzheimer's or dementia diagnosis

We’re all different and no two people will respond to a diagnosis of dementia in the same way. There is no “right” or “wrong” way to react, so don’t tell yourself what you should be thinking or feeling. Instead, give yourself time to process the news and transition to your new situation. You may feel you’ve reached acceptance one day, and then suddenly feel overwhelmed by difficult emotions the next. Allow yourself to grieve and adjust.

[Read: Coping with Grief and Loss]

Be kind to yourself. Alzheimer’s is not your fault and there’s no reason to blame yourself. With time, you can work through the shock of diagnosis and prepare yourself for the challenges that lie ahead.

Reaffirm your identity. Having Alzheimer’s or another dementia doesn’t have to define who you are as a person. You’re still you, still the same person you were before the diagnosis. Pursue those roles that do define your sense of self: spouse, parent, grandparent, entrepreneur, gardener, cyclist, musician, volunteer, friend.

Allow yourself to feel. Unpleasant emotions exist whether you choose to acknowledge them or not. Trying to ignore your feelings will only fuel your stress and delay acceptance of your new situation. By allowing yourself to feel your emotions, though, you’ll find that even the most intense, upsetting feelings will pass, the shock and distress will start to fade, and you’ll be able to see a path forward. Try writing down your feelings, talking to someone about what you’re experiencing, or utilizing HelpGuide’s Emotional Intelligence Toolkit.

Learn all you can about the type of dementia you’ve been diagnosed with. Whether it’s Alzheimer’s disease, vascular dementia, or another type of dementia, by learning all you can, you can better cope with symptoms and even help slow the progression of the disease.

[Read: Dementia Symptoms, Types, and Causes]

Seek early intervention. Since dementia symptoms can be caused by any number of conditions, obtaining an early, accurate diagnosis is critical, especially if symptoms appear suddenly. Conditions such as stroke, drug interactions, tumors, and seizures should be addressed immediately. Timely intervention may also control or eliminate symptoms from other physical and psychological factors.

Adapt your environment. You can help preserve your health and autonomy for longer by taking simple precautions, such as removing tripping hazards, increasing lighting, developing daily routines, and leaving reminder notes where you need them most. Keep items you use daily in easy to remember places, such keys on a hook by the door. Making use of phone apps, calendars, and alarms can also help you stay organized. As your needs change over time, planning and flexibility can help keep you one step ahead.

While a diagnosis of dementia is one of the last things anyone wants to hear, now that you know what you’re facing, you can start taking steps to ensure you’re able to live your life as fully as possible for as long as possible.

Coping with a dementia diagnosis tip 1: Reach out to others

Receiving a dementia diagnosis can leave you feeling isolated and alone. You may feel cut off from friends and family who aren’t able to fully understand what you’re going through. You may retreat into your shell for fear of being a burden to others. Or you may even worry about how your relationships could change once people learn you have dementia. While these worries are natural, they’re not a reason to isolate yourself. At this difficult time, the love and support of others can have a huge impact on your mood and outlook.

Living with Alzheimer’s or another dementia is not easy, but there is help for this journey. Don’t wait for others to offer support; be proactive and reach out. The more support you have, the better you’ll be able to cope with symptoms and continue to enrich your life.

Stay connected with family and friends. Maintaining your closest relationships and continuing to enjoy social activities can make a world of difference to your health and attitude. As we age, retirement, relocation, and the loss of loved ones can often shrink our social networks, but it’s never too late to build new, meaningful friendships.

Contact your local Alzheimer’s Association. There are Alzheimer’s organizations all over the world that offer a variety of support programs for people with every type of dementia. Many can connect you with others facing the same challenges or volunteers who can offer support, advice, and companionship. Early-stage social engagement programs, for example, can help you mix with other people who’ve recently been diagnosed. See below for links.

Seek spiritual counsel. Religious leaders can offer real comfort to believers, as well as ongoing social contact. Even people who do not regularly attend religious services may look towards religion following a diagnosis of dementia. If you’re not religious, you may prefer to speak to a therapist or counselor.

Talking to others about your diagnosis

While support from family and friends is crucial, choosing who to tell about your diagnosis is always a very personal decision. You may want to share it with just your closest family first, for example, then with a wider group of friends and acquaintances later. Whatever you decide is right for you, it’s important not to try to go it alone and deny people who care about you the chance to provide support.

[Read: Coping with a Life-Threatening Illness or Serious Health Event]

It’s also important to be prepared for a broad spectrum of reactions. Just as you may have felt a combination of shock, anger, grief, and despair at news of your diagnosis, people close to you may have similar reactions. Remember: you don’t have to cover everything all at once. Your first conversation with loved ones is likely to be just the start of an ongoing dialogue as you all learn more about the disease and the challenges you’ll be facing in the future.

You may find that one of the hardest things about being diagnosed with dementia is the impact it can have on your relationships. As your independence declines, you may become more reliant on your spouse, children, or friends. You may lose your role as provider, financial decision-maker, or designated driver as others take over those responsibilities. Some older friends may even pull away, your diagnosis raising uncomfortable questions about their own health.

Tip 2: Take steps to slow the advancement of symptoms

Even when you’ve been diagnosed with Alzheimer’s disease or dementia, there is still a great deal that you can do to slow its progress. The same healthy lifestyle changes and mental stimulation techniques that are used to prevent or delay the onset of dementia can also be effective in slowing the progression of the disease and maintaining your independence for longer.

1. Get moving. Regular exercise stimulates the brain’s ability to maintain old connections, make new ones, and slow deterioration of your cognitive abilities.

2. Reach out to others. The more you connect face-to-face with others, the more you engage socially, the better your cognitive function will be.

3. Eat well. Eating a brain-healthy diet, such as the Mediterranean diet, can help reduce inflammation, protect neurons, and promote better communication between brain cells.

4. Seek mental stimulation. By continuing to learn new things and challenge your brain, you can strengthen your cognitive skills and stay mentally active for longer.

5. Improve your sleep. Getting quality sleep can flush out brain toxins and avoid the build-up of damaging plaques.

6. Manage stress. Unchecked stress takes a heavy toll on the brain, shrinking a key memory area, hampering nerve cell growth, and worsening Alzheimer’s symptoms. Relaxation practices and other stress management techniques can help you ease the tension and regain control.

7. Look after your heart. What’s good for your heart is also good for your brain. Controlling your blood pressure, monitoring your cholesterol levels, limiting alcohol consumption, and quitting smoking can have beneficial effects on both your heart and brain health.

Tip 3: Pursue activities that bring you meaning and joy

Having Alzheimer’s or another dementia doesn’t mean your life has to stop moving forward. By pursuing meaningful activities and relationships, you can continue to nourish your spirit and find pleasure and purpose in life.

Even when symptoms advance and certain activities become difficult, you can still find other ways to nurture and enrich your spirit. If you can no longer paint, for example, you may still be able to visit museums and appreciate the art of others. Or if you can no longer cook, you may still be able to devise the menu and help shop for ingredients.

While we all have different ways of experiencing meaning and joy, you may want to:

Pursue your favorite hobbies and interests. Engaging in activities that are important to you can help maintain your identity as well as enrich your life. Try taking a class or joining a club to keep your interest growing or to explore new activities.

Build your legacy. In the early stages of dementia, many people are mindful of how they want to be remembered. Maybe you want to pass on your skills and knowledge to others, or leave a record of your life for your grandchildren to enjoy. You might want to create photo albums, write your memoirs or a how-to book, share your favorite recipes, make a record of family traditions, or research your family history. Or perhaps you simply want to spend time with your closest loved ones to create new memories.

Participate in Alzheimer’s research or clinical drug trials. Many patients derive a strong sense of purpose from helping to advance the medical knowledge of dementia and aiding future generations—as well as gaining access to new treatments.

Volunteer for a cause that’s important to you. Nothing enriches life more than helping others. It can also allow you to pass on the important skills and experience you’ve garnered in your career and life. You may even want to volunteer for a dementia organization to help raise awareness, improve services, or assist others who are struggling to cope with their diagnosis.

Travel somewhere you’ve always wanted to go or to a favorite place that’s special to you. Document your trips and share them with friends and family or on social media.

Spend time in nature. Whether it’s hiking, fishing, camping, or simply walking in the park, spending time in green spaces can ease stress, deepen spirituality, and make you feel happier.

Savor positive experiences. Even when symptoms have progressed and your abilities are more severely impacted, try to focus on the simple activities that you can still do. With appropriate support, people with dementia are still capable of experiencing and providing enjoyment and connection—even through the advanced stages of the disease.

Tip 4: Deal with anxiety and depression

Depression and anxiety are common among early stage Alzheimer’s patients. Symptoms such as withdrawal, agitation, feelings of worthlessness, and changes in your sleeping patterns can make dementia symptoms worse, though, and limit your independence. Don’t ignore symptoms. As well as counseling and medication, there are plenty of self-help steps that can help you overcome anxiety and depression.

• Learning how to challenge anxious thoughts and develop a more balanced way of looking at your new situation can help you come to terms with your diagnosis and ease anxiety.
• Opening up and talking about your fears and other emotions with someone who makes you feel safe and supported can help boost your mood.
• Exercising regularly, eating well, and improving your sleep are also proven ways to help improve depression and anxiety symptoms.

Tip 5: Plan for the future

While it’s not easy to think about, getting your finances in order and figuring out how you want your healthcare handled can give you a sense of power over your future. Talk with your loved ones and communicate your wishes. Discuss and document treatment and end-of-life preferences with your doctors and family members. Appoint someone you trust to make decisions for you when you can no longer make them for yourself.

Although these conversations may be difficult, making your wishes known can also be empowering. And by making important decisions early, you’ll avoid future medical, financial, and legal confusion.

If you live alone

These days, more and more of us find ourselves living alone as we grow older. While a diagnosis of Alzheimer’s or another dementia doesn’t have to immediately change that, it does make it even more important to plan early for the future.

Without a spouse or partner, it’s often down to you to recognize when you need help with housework, meal preparation, bill paying, driving, and day-to-day care. That can become difficult as the disease progresses and changes in your thinking occur. Living alone means you’re more at risk for falls, accidents, and wandering. But by planning early for how your needs will be met, you can maintain your independence for longer.

• Home care services can help with household chores, personal care, and transportation.
• Day care programs can also help with personal and medical care as well as providing opportunities for socialization.
• Consider food delivery services such as Meals on Wheels.
• Legally authorize someone you trust to handle financial matters such as bill paying.
• Use apps or other reminder systems to ensure you take your medications on time.
• Choose a medical alert system with a wearable device to help you summon assistance in an emergency. Similarly, a wandering response service can help track you if you wander and get lost.
• Listen to friends and loved ones when they express concern about your ability to take care of certain tasks.

If a loved one has been diagnosed with Alzheimer’s or dementia

If someone close to you has been diagnosed with dementia, you’ll be dealing with a host of difficult emotions. You may be grieving for your loved one, especially if significant memory loss is already present. It’s important to allow time—for yourself and your loved one—to come to terms with the news. Encourage your loved one to open up about what they’re feeling and make yourself available whenever they’re ready to talk.

When talking to someone about their dementia diagnosis, don’t resort to platitudes such as telling them to “stay positive” or comparing their situation to someone else’s. Allow them to honestly express their emotions, even if it’s difficult to hear, or they become angry and upset. Remember, you don’t have to provide answers, just a listening ear and a hug or a tender touch to let them know you care.

Learn about dementia. Understanding what to expect will help you plan for care and transitions and recognize your loved one’s capabilities throughout each stage of the disease. Despite its many challenges, caregiving for a loved one can also be a deeply rewarding experience.

Involve your loved one in decision-making for as long as possible. In the early stages, support your loved one’s independence and self-care, but be prepared for their cognitive and physical regression to ultimately require 24-hour care.

Don’t take on the caregiving journey alone. No matter how dedicated you are, you will need some help in caregiving in order to take care of your own health and other obligations. The sooner you establish a support network, the easier the caregiving journey will be. Support could involve help from other family members, professional in-home help, respite care, or even moving your loved one to a nursing home or other care facility.

[Read: Tips for Alzheimer’s and Dementia Caregivers]

Treasure the time you have with your loved one. Although this is a painful time in so many ways, a diagnosis of dementia does offer you the opportunity to savor the time you have left with your loved one. Instead of focusing on the abilities your loved one has lost, celebrate what they can still do. And don’t pass up the opportunity to say your goodbyes, an opportunity that many people who lose someone suddenly regret not having.