When you or a loved one receives a diagnosis of dementia, you might feel anxious, sad, angry, or overwhelmed. You might also feel relieved, finally having a diagnosis that explains the behaviors or challenges you’ve seen.

While there are 10 million new cases of dementia diagnosed worldwide each year, you can still feel isolated as you determine what this new diagnosis means for you, your loved one, and your family. As you begin to untangle the emotions that come with a dementia diagnosis, you can start to regain some control by beginning to plan for the future while embracing the present. 

Here are steps to take after a dementia diagnosis to help you plan ahead and support your loved one as best you can.

Understand the dementia diagnosis

As with any new diagnosis, the first step is to educate yourself. There are many stereotypes and myths that surround dementia, and if you don’t have reliable information, it’s easy to fall into a spiral of anxiety and depression. Empower yourself by finding reliable and true information from trusted sources like:

• Your primary care physician and/or neurologist.
• Your local chapter of the Alzheimer’s Association.
• Online information sources, such as the Mayo Clinic or the National Institute on Aging.
• Local hospitals and senior living communities that feature memory care, as they may offer educational lectures with professionals.

Steer clear of believing everything you see online, including viral posts on social media. If you’re unsure about something you read online, make sure to double-check the information with another reliable source.

Ensure the safety of the person diagnosed with dementia

Depending on the stage at which you or your loved one was diagnosed, you might need to pay attention to safety concerns, especially if your loved one is living at home alone. Thanks to early awareness and detection, many older adults are being diagnosed earlier in the disease progression. This means that they will likely be able to remain living at home safely for some time, but they might need a little extra support. Here are some ideas that can help:

• A pill organizer or automatic pill dispenser can reduce medication errors and stress.
• A check-in system gives everyone involved peace of mind. You can schedule a daily video call or send and receive simple “good morning” and “good night” texts every day.
• Install safety knobs on oven and stovetop controls.
• Purchase a medical alert device or a smartwatch that includes GPS technology so that you can locate your loved one if they become confused or lost while out on their own.
• Organizational tools can help your loved one feel less overwhelmed and care for themselves better. For example, Post-it notes on the fridge can help them with what to eat each day, and packing away out-of-season clothing can help make decisions easier while they are getting dressed.

Stay flexible, and listen to what might be overwhelming your loved one so you can work together to find a solution. Remember that since dementia is a progressive disease, what works today might not work later on. 

Select a team of experts

You and your loved one cannot manage dementia alone. You should gather a team of trusted professionals now so that you can call on them when you need them for services and care. Here are some professionals you can involve in this team:

• Primary care physician.
• Neurologist.
• Geriatric care manager, especially if you live far away or need some support with local resources, organization, or communication.
• Social worker, therapist, or counselor.
• Geriatric psychiatrist.
• Physical, occupational, and speech therapists.
• Home care agency that offers respite care support.
• Financial advisor.
• Elder law attorney.
• Senior care advisor.

Keep each expert’s name and contact information (email, office address and hours, and phone number) in an easy-to-access place, both digitally and on paper. This way, you’ll have their information on hand when you need it.

While you gather the team of experts, remember to begin rallying friends, family members, and neighbors who can help out in the following weeks, months, and years. Gather their information for when you need to ask for help with tasks like checking in on your loved one, dropping off a meal, or driving them to an appointment.

Get organized with appointments

As with any medical condition, a dementia diagnosis will come with a list of follow-up appointments, check-in visits, and more. It can feel overwhelming at first, but the sooner you get everything organized and scheduled, the more in control you will feel. 

Here are a few tips for making organization and follow-through a bit easier:

• Schedule one day a month for planning for the next month. Use a few hours to call offices to schedule appointments, schedule transportation (if needed), and send information to anyone who will be attending the appointment with your loved one.
• Use a shared online calendar, such as Google Calendar or Apple Calendar, to create appointments and share them with whoever will be helping out. This is a great way to keep all the appointment details in one place, including concerns to discuss, where to park, and other helpful hints.
• If you can and your loved one is up to it, try consolidating two appointments to the same day. In between appointments, have a nice lunch to make the most of your time together.

Finalize estate planning and advance directives

If your loved one is diagnosed in the early stage of dementia, empower them by helping them ensure their estate planning is up to date. This is a good time to make an appointment with a lawyer to review legal documents like a will, power of attorney designation, and advance directive, including any do-not-resuscitate (DNR) order and living will. Allow them to speak freely about their wishes, and encourage them to share their preferences with their designated power of attorney. 

Remember to make sure everyone in the family understands what your loved one wants and that the appropriate people have copies of legal documents. The power of attorney should also know how to access the original copy of the will and other advance directive paperwork.

If your loved one is already showing signs of decreased competence and judgment, power of attorney might already be activated. If you are unsure if your loved one has designated a power of attorney or if you cannot find the paperwork, you should contact your attorney to begin the process. In the meantime, your loved one will need to use a guardian appointed by the state.

Seek counseling and local resources

You aren’t alone when it comes to supporting your senior loved one, even if you do initially feel isolated. Turn to your loved one’s local resources for support, such as Meals on Wheels or a senior services department that can help with insurance questions, durable medical equipment rental, and educational sessions. In addition, your loved one’s Area Agency on Aging can direct you to other resources and support services.

Now is also a good time to find a way to care for yourself. If you don’t already see a therapist, find one and make a standing appointment. It can be helpful to talk about your feelings, work on coping skills, and find ways to care for yourself as you step into a more caregiving role. Caregiver support groups can also be an excellent resource during this time and the rest of your caregiving journey.

Begin future planning

It’s never too early to begin planning for the future, especially with the progressive nature of dementia. Around-the-clock oversight and care will likely be in your loved one’s future, whether in the home or in a senior living community. Now is the time to begin exploring your options, with your loved one’s input, and comparing those costs with your loved one’s budget. Involve a financial planner, and look for ways to reduce costs, such as using long-term care insurance, a Medicaid waiver, or Veterans benefits (if applicable).

Stay present

Even while things feel chaotic and emotional, do your best to remain in the moment and find ways to create moments of joy and peace with your loved one. Living in the moment and slowing down are perhaps the best ways to connect with someone living with dementia, so try to focus some of your time away from caregiving tasks and toward enjoying a cup of coffee together, a stroll around the block, or simply watching the birds in the garden while sitting next to each other.

If your loved one has recently gotten a dementia diagnosis, or if you think a loved one could use some help around the home, a local Oasis Senior Advisor can help you understand the care you need and help you find it.