Coping with an Alzheimer’s or Dementia Diagnosis
Gaining acceptance and moving forward
Having Alzheimer's disease or another type of dementia can be a frightening and challenging experience. But these strategies can help you maintain a rich and fulfilling life for longer.
The initial shock of a diagnosis of Alzheimer's disease or other type of dementia is over, but now you're left facing new questions. How can you move forward living with the condition? Will it come to define you? How will you cope as the disease progresses?
It's true that things are changing for you. But you can still enjoy a fulfilling life. And you can still find ways to reaffirm your identity. You can even reach for new goals, make new friends, and explore new sources of joy. Think of this as a new chapter of your life and acknowledge the many possibilities.
This new phase of life will require you to adapt to certain changes, though, including:
The first major step is to ensure you don't have to face these changes alone. Look for family members, friends, or a professional caregiver to rely on. They don't have to keep a constant eye on you or take control of all your affairs. Your sense of independence is still vital, especially when you're in the early stages of dementia. However, it’s never too soon to prepare your loved ones to help you with tasks you may find difficult in the future, such as managing finances or dealing with legal matters.
As the Alzheimer's or dementia progresses, a caregiver will play an increasingly important role in your life. Bring them along to your doctor visits or when you need to talk to financial planners or legal advisors, so they can stay informed for the road ahead.
After being diagnosed with Alzheimer's disease or another type of dementia, you might have noticed a change in the way people — even your closest loved ones — interact with you. Certain friends may seem to withdraw. Or maybe family members hesitate to confide in you. In other cases, people may act as if you're completely incapable of doing anything on your own. You might feel stripped of your usual roles in other people's lives.
The stigma surrounding dementia is largely due to people’s fear and lack of understanding about the disease. However, it can have a real effect on your self-esteem, mental health, and overall quality of life.
There is an upside here, though. You're in a unique position to fight against the stigma and make life easier for others who are in a similar position.
Educate others. Counter ignorance with information. Gather a few reputable resources on Alzheimer's disease and dementia and share those resources with friends and family members. As you learn more about the condition yourself, you'll likely feel more confident in explaining it to other people. You can lay out the facts about dementia as well as share your personal experiences.
[Read: Alzheimer’s Disease & Dementia]
Advocate for yourself. Another way to break the stigma surrounding dementia is to be upfront about your needs, wants, and limitations. Let people know what you can handle and what you might need help with. If a family member seems to be too controlling, you can say, “I appreciate your concern, but I can handle this task. But here's what you can help me with…”
Be prepared to cope with others' reactions. You can't change the way everyone in your life reacts to your diagnosis, and some people might react in surprising ways. For example, they might begin to pull away from you or leave you out of events. This could be due to their own personal fears or inability to accept the news.
Give yourself time to grieve the loss of those friendships, but also recognize that stronger bonds will continue to endure. Refocus on the people who continue to support you no matter what.
Socializing is key to living well with Alzheimer's or dementia. Although you'll want to stay invested in the lives of family members and old friends, you can also continue to expand your social circle.
Look for peer support from other people who are living with dementia. In-person or online groups give you an opportunity to talk to people who can relate to your experiences. You can also share and receive useful tips on adapting to this new stage of life.
Of course, these groups don't always have to revolve around chats about dementia. Some groups engage in creative and relaxing hobbies, such as arts and crafts or nature walks. No matter what the activity, you can socialize without feeling like people are judging you for your diagnosis or treating you any differently.
The forgetfulness and moments of confusion that come with early dementia can leave you feeling anxious and frustrated. You might feel angry at yourself when you struggle to recall events or make quick decisions. Consistency can help offer you a sense of peace and familiarity.
Take steps to establish a predictable routine. Shower, get dressed, have breakfast, enjoy hobbies, and take care of chores on a set schedule.
Use organizing tools. Items like calendars, notebook planners, and electronic organizers can help you keep track of important dates and events. Store your organizer in the same spot every day as part of your routine. If necessary, you can also set reoccurring reminders on your phone to help keep you on schedule.
Use memory aids. Some people living with dementia find that visual cues throughout their living space are helpful. You might use colorful labels or signs to mark the locations of certain types of clothing items or kitchen utensils. Transparent storage systems are also useful, as they allow you to see the contents of a drawer without opening them.
Another way to handle changes in memory is to rely more on technology. Brainstorm a list of tasks that can be automated. For example, you can automate payments for utilities and insurance bills. Ask a trusted friend or family member to occasionally make sure the payments are going through.
You can also use accessories such as automatic pill dispensers or pillboxes that feature alarms to make life easier.
Impaired concentration is another effect of Alzheimer's and other types of dementia. As your attention span decreases, you may find it difficult to complete familiar tasks. It's more important than ever to find ways to clear your head and narrow your focus.
Minimize distractions. It's easy to experience information overload when you have items such as smartphones, laptops, and televisions around your home. Put electronic devices away when you need to focus on a specific task. When you do use electronics, be mindful of how many Internet browser tabs or apps you have running at a time.
Reduce environmental distractions as well. Turn off televisions or radios if they continually interrupt your thoughts. Adjust room temperature or lighting if you're uncomfortable. Move to a quieter setting if you're in public and the chatter around you makes it hard to concentrate.
Monotask. When you're switching back and forth between tasks, such as texting and watching a TV show, you're more likely to make mistakes or miss something. When one of the tasks is a potential hazard, such as cooking, multitasking can even pose a risk. Instead:
Delegate.When necessary, don't feel ashamed to leave tasks that involve quick decision-making and increased focus, such as driving to new places, to other people. There's no shame in acknowledging your limitations.
Alzheimer's disease and dementia can affect your ability to regulate emotions and control impulses. Maybe you feel more anxious or irritable than you used to. In some cases, your mood may seem to swing wildly, as joy suddenly gives way to sadness to anger. Or perhaps you're still struggling with feelings of depression or anxiety that came with the initial diagnosis.
Several strategies may help you manage your moods.
Identify your stressors. Maybe filing taxes leaves you feeling frustrated or shopping for groceries alone makes you feel anxious and overwhelmed. Delegate those tasks to friends and family members or a caregiver.
Be mindful of how your mood swings can affect others. You might find yourself lashing out at people you care about, especially when you feel confused and frustrated. Recognize that this is likely due to dementia's effects on your impulse control. Your loved ones should also be aware of this as well and work with you to find ways to reduce stressors.
[Read: Alzheimer’s and Dementia Behavior Management]
Engage in relaxing hobbies. Whether you enjoy fishing, listening to music, or birdwatching, continue to embrace the activities that help you feel grounded. You may also find it beneficial to pick up a few new practices, such as journaling or meditating.
About 25 to 35 percent of people living with Alzheimer's disease experience sleeping problems. Various factors can contribute to sleep disturbances, including medications for dementia and changes in circadian rhythm. Lack of sleep not only leaves you feeling irritable and unfocused, but it can also accelerate brain damage.
The following sleep hygiene practices may be useful:
[Read: Sleep Tips for Older Adults]
Despite your best efforts, you'll find that sleep disruptions can still occur. You might wake in the middle of the night feeling confused about the time of day and your location. Keep a digital clock on your nightstand. The display should be easy to read and include AM and PM markers. Also place familiar items, such as photos of your family, on the nightstand to offer a quick sense of comfort and security.
Keep your floor clean and use nightlights strategically to reduce the risk of falls. Keeping bedroom clutter to a minimum will also cut down on odd shadows, which can be alarming if you wake up feeling confused.
In the early stages of Alzheimer’s disease or another dementia, you may experience decreased balance and mobility. These changes in physicality can feel discouraging, but you don't need to resign yourself to a sedentary lifestyle.
In fact, you may want to be more active than you were before the diagnosis. Studies show that regular aerobic or cardio exercise may slow down the rate of deterioration in the hippocampus, a part of the brain associated with learning and memory. Exercise can also help you manage depression and anxiety, improve your focus, and boost your sense of confidence.
Here are a few tips on staying active while living with dementia:
Set realistic expectations. You don't have to power through an intense 30-minute workout. Performing shorter routines throughout the day can also help you reach a goal of 30 minutes of daily activity.
Be mindful of your movements. If you have difficulty with balance, stick to seated exercises and routines that involve slow movements, such as tai chi.
See the potential in daily activities. You don't need to run marathons or hit the gym. Activities such as dancing with your partner, walking with a group of friends, and gardening in the backyard all count as exercise.
Here's another form of physical activity that you can to continue to enjoy: sex. It's not uncommon for older adults to worry about how aging may affect “performance.” And in the case of Alzheimer's or dementia, you may find that your sexual needs and desires start to change. For example, you might experience an increase or decrease in your sexual interest.
Talk about it. It's important to communicate openly with your partner, especially as your desires and concerns change. Not every conversation has to be serious though. Lighthearted and playful banter can help you both relax, even as you learn about each other's needs.
Expand your definitions of sex and intimacy. Consider options beyond intercourse, such as reading erotic literature together, kissing, and massage. Keep an open mind and experiment to see what works for you and your partner.
Build your confidence. Talking to your partner is important, but you'll also want to consider your own internal monologue. A negative view of your own body or abilities can stall your sex drive. Practice accepting your natural changes and letting go of feelings of inadequacy.
In addition to staying active, you'll also need to think about your physical safety. If you live at home, you still have plenty of control over your environment. So, make some modifications to ensure your home remains safe and easy for you to navigate.
Look for ways to simplify the space — both in terms of aesthetic and function. This can make it easier to keep track of everything and reduce any potential hazards.
Get rid of unnecessary items. Whether you have rarely used furniture pieces or boxes of old décor and clothing, try to discard or give away excess items. This can help reduce the risk of misplacing the items you do use on a regular basis. You'll also end up with less clutter that could contribute to falls, fires, or other dangerous situations.
Clear up fall hazards. Throw rugs add to a room's aesthetic, but they can also be hazardous. In fact, rugs and carpets can be common causes of injuries in older adults. Aim for a more uniform look by either getting rid of throw rugs or limiting how many you use around the house. If you have electrical cords or any other items that can cause falls, make sure to tend to those as well.
Install safety items. A variety of home-safety devices can also help reduce the risk of falls. Ensure you have reliable handrails on your stairways and safety bars in your tub or shower, for example. Invest in a fall monitor that can alert your loved ones of an accident.
Make sure you have adequate lighting and functional smoke and carbon monoxide detectors throughout your home. In the kitchen, you can have an automatic shut-off switch installed on your stove. Or use appliances that remind you when the food is ready, such as a microwave or slow cooker.
Consult an occupational therapist. A specialist can take a look at your space and offer personalized suggestions on making your home safer.
In the early stages of Alzheimer's or another dementia, you may begin to feel stripped of your sense of purpose. This may be due to new limitations caused by the disease or the way other people perceive your limitations. For example, family members may hesitate to let you babysit grandkids following your diagnosis. Or maybe issues with your memory or balance prevent you from playing sports or coaching as you once did.
Even when you can no longer do all the activities you enjoyed before, by reassessing your sense of purpose, you can find a way to bring your goals and your current abilities into alignment. Here are some questions to ask yourself:
What did you used to love? Think about passions and interests that you pursued when you were younger. Are there ways to reengage with those interests? Maybe you had a fascination with cinema or art. You could volunteer to help put up posters or take tickets at a local theater. Did you love cooking large meals for your family? Start to compile your recipes and cooking tips into a book for future generations.
What makes you curious? Let your curiosity guide you towards a new sense of joy and purpose. What has always fascinated you? It's never too late to embrace new artistic pursuits. Consider taking courses in photography, painting, or pottery. Learning new skills can also be a way to keep your brain active.
How can you help others? Sometimes the best way to find new purpose in life is to focus on the needs of others. Look around your community and ask, “What's missing?” What can you offer those around you? You might want to participate in a local food or book drive. You could also embrace a role as a public speaker and inform the public about dementia or any other condition you feel doesn't get enough attention.
As research on Alzheimer's disease and dementia continues to advance, experts are always looking for people to participate in studies and trials. Consider becoming a part of these studies as a way to help medical experts explore new treatments. Contact the Alzheimer's association in your country to find out more (see below for links).
The strategies above can help you adapt to the many changes you'll experience. However, there are also additional steps you can take to help slow the process of brain deterioration.
Protect your heart. Arterial stiffening is linked to a decrease in brain health. Fortunately, there are many lifestyle choices you can make to improve your heart health. For example, you can reduce your sodium intake, stop smoking, or regularly enjoy aerobic or resistance exercises.
Eat a healthy diet. Research suggests that following a Mediterranean diet or a variation of it may slow cognitive decline. Prioritize fruits, veggies, legumes, whole grains, and seafood while limiting red meat and sweets. This kind of diet can also improve heart health.
Manage your stress. High stress can accelerate dementia and worsen its symptoms. Regularly practice stress-reducing activities, such as meditation, deep breathing, or yoga. Managing your stress can also help to improve your heart health.
Stimulate your brain. Research shows that mental training can help you maintain and improve your cognitive functioning. There are plenty of ways to stimulate your brain. Open up a book of challenging brain teasers and riddles. Put together a puzzle. Try out a new board game. You can also challenge yourself to learn a new skill or improve on an existing one.
For more caring for your brain health, read: Preventing Alzheimer’s Disease and Dementia—or Slowing its Progress.
As Alzheimer's or dementia progresses, you'll likely notice that your limitations and needs continue to change. Keep a list of which tasks you want to delegate to others. Maybe one day you'll want to leave your finances entirely in the hands of someone else. Or perhaps you'll decide that you want to move in with other family members or into an assisted living home. Putting your trust in a caregiver is just another step in adapting to changes.
Until then, continue to treasure your independence. Keep looking for ways to build on your legacy, stay mentally and physically active, and have a positive effect on those around you.
Call the Alzheimer’s Association helpline at 1 800 272 3900 or the Alzheimer’s Foundation of America at 1-866-232-8484.
Call the Alzheimer’s Society helpline at 0300 222 1122 or find support near you.
Call the Dementia Australia helpline at 1800 100 500 or find support in your region.
Find an Alzheimer Society in your area.
Call the Alzheimer’s and Related Disorders Society of India helpline in your area.
Browse a worldwide directory of Alzheimer associations for information, advice, and support near you. (Alzheimer’s Disease International)
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