Finding out you or a loved one has dementia can be a frightening and stressful time. There are so many decisions that need to be made while dementia is still in the early stage. Who will manage your finances? Do you need a power of attorney agreement? What about long-term care?
The best way to combat anxiety, worry, or sadness is with research and knowledge. In this article, the Ability Central team shares the most important first steps to take after a dementia diagnosis.
What are the first steps to take after a dementia diagnosis?
After receiving a dementia diagnosis, it’s easy to get overwhelmed by information, prognoses, medications, and more. People with dementia and their loved ones can use this checklist to work through the important things ASAP, so they can enjoy more time together without worrying about the big stuff.
The most important things to do after being diagnosed with dementia are to:
Create your care team.
Talk to your loved ones.
Take care of your mental health.
Decide on possible treatments.
Establish routines.
Make legal plans.
Make financial decisions.
Consider care homes and other late-stage care options.
Clarify end-of-life wishes.
We’ll cover these steps in more detail below.
1. Create your care team.
A care team is a group of people who help, treat, and partner with someone with a disability or disease. When it comes to dementia care, a care team represents friends, family, neighbors, loved ones, doctors, and other professionals who can provide the best care.
Choosing a quality care team can help someone with dementia manage stress, overwhelm, and anxiety. Think about the kind of help you need: will someone need to drive you to doctors’ appointments? Do you plan to cook at home or work with a grocery delivery service? Who will you call if you run out of medication?
Knowing in advance who will help you out in certain situations reduces stress in both every day and emergency situations. Once you’ve chosen your care team, make a list of everyone’s contact information (phone numbers, email, etc.) and keep a copy of the list somewhere easy to find, like pinned to your fridge or on your bedside table.
Who should be on a dementia care team?
Your care team represents not only the medical professionals you rely on for treatment, but the family members and friends who will support you on your journey. A dementia care team should include:
The doctor(s) in charge of your diagnosis and treatment
Any professional aides, like in-home nurses or financial planners
Friends and family who offer logistical support (driving to doctors’ appointments, help around the house, grocery delivery, etc.)
Friends and family who offer social support (home visits, social outings, family events, club members, etc.)
2. Talk to your loved ones.
Remember that this is your diagnosis, and you get to choose how you face it. Whether that means a large public announcement or private conversations with loved ones, it’s up to you how you share the news.
The truth is, though, that most people with dementia will eventually need help from their friends and family. With that in mind, it’s good to have the important people in your corner before you need help.
When you’re ready to tell people about a dementia diagnosis, consider:
Making lists of who needs to know, who you want to tell, and when/how you want to tell them
Finding appropriate times and places to discuss the diagnosis
Being straightforward rather than talking around the subject
Asking how much they already know about the diagnosis, so you don’t have to have the same conversation over and over
Being honest about your feelings
Sharing if and how your loved ones can help you – including if you don’t want help
Establishing boundaries
Choosing what information to share about treatment or prognosis, especially if talking to young children
Encouraging your loved ones to educate themselves about your diagnosis
3. Take care of your mental health.
One important note is to take care of your physical and emotional needs before you focus on anyone else’s. Make sure mental health stays a top focus in your plans. Work with a therapist, grief counselor, or family counselor in addition to any legal or financial professionals you consult.
What impact does a dementia diagnosis have on mental health?
People with a new dementia diagnosis often experience overwhelming emotions like:
Anger
Denial
Depression
Fear
Frustration
Isolation
Relief at having a diagnosis
Resentment
Sadness
Therapy, support groups, and medication can help people with dementia face these new challenges. To learn more about mental health and other dementia symptoms, see What Does Dementia Look Like in Adults? Dementia Symptoms and Warning Signs.
4. Decide on possible treatments.
There is no cure for dementia or the diseases that cause it, but certain medications and treatments can help minimize symptoms and slow their progression.
Talk to your doctor about treatment options like:
Medication. Certain medications may help manage or slow symptoms of dementia. Other medications, like sleeping pills, antidepressants, or antipsychotics, can help manage the physical and mental health complications of dementia.
Clinical trials. New research into dementia produces experimental treatments. Talk to your doctor about the risks and benefits of volunteering to test a new medication or procedure.
Therapies like occupational therapy, physical therapy, family therapy, and cognitive behavioral therapy (CBT). These help people with dementia and their families learn coping skills and safer behaviors.
Home safety preparations. Working with a service or with loved ones, you can make your home safer to navigate by removing clutter and noise.
Lifestyle changes like simplified communication methods, exercise, social activity, morning and nighttime routines, calendar management, and dedicated time with family. While these changes can’t cure dementia, they can offer relief or distraction from certain symptoms.
Alternative medicine like dietary supplements, alternative therapies, and herbal remedies. Always talk to your doctor before adding or stopping a treatment.
Alternative therapies like music therapy, pet therapy, aromatherapy, massage therapy, art therapy, or group gardening.
5. Establish routines.
Establishing familiar routines in the early stages of dementia can provide familiarity, comfort, and function in later stages. Some routines to create might include:
Day-to-day tasks like washing, dressing, and eating
Money management
Self-care
Communication with loved ones and doctors
Transportation
Medication
Learning to rely on a care team
Why are routines important for people with dementia?
According to the American Seniors Housing Association, establishing routines can help people with dementia:
Navigate their world
Find a sense of order in their days
Maintain independence for as long as possible, even as short-term memory starts to fail
6. Make legal plans.
Legal and financial discussions are difficult to initiate, but they are essential while someone with dementia has the legal capacity to participate. “Legal capacity” is the ability to understand and appreciate the consequences of one's actions and to make rational decisions. As dementia progresses, the loved one may no longer meet the criteria.
The first step is to collect legal and financial documents to understand what is already in place. Then, families should discuss their approach, what they want to happen, and which legal documents they will need.
Legal documents to consider should include the following:
A power of attorney allows someone with dementia to name a trusted person to make financial and other decisions when necessary.
A power of attorney for health care gives a medical professional, like someone on your care team, the power to make health care decisions on your behalf when you are no longer able.
A durable power of attorney for finances/property allows someone you choose to make decisions about your finances.
A Physician Order for Life-Sustaining Treatment (POLST) is a medical form that specifies the types of life-sustaining treatment you do or do not want.
A living will specifies your choices about medical treatments you want or do not want, including end-of-life care.
A standard will provides information about how your estate will be distributed.
A living trust pools financial resources into one place and provides instructions for handling those finances, like making donations to charity or supporting family members.
For more information on the specifics of legal documents, see the Alzheimer’s Association website.
The National Institute on Aging also offers a downloadable checklist called “Getting Your Affairs in Order: Advance Care Planning.”
7. Make financial decisions.
The average cost for dementia care is $43,644 per person per year. Is there enough money in your estate to account for these costs? Things like medication, in-home care, memory care facilities, and group homes can add up quickly. Taking the time to assess your finances early can help reduce stress later.
When you start financial planning, the Alzheimer’s Association encourages you to consider:
Who on your care team should be part of the process
Who should have decision-making power (Power of Attorney) when you can no longer make financial decisions
The potential costs of care
Available government benefits for dementia
Medical insurance policies, especially policies for long-term care
Veterans’ benefits
Professionals with expertise in financial planning and end-of-life care
8. Consider care homes and other late-stage care options.
Eventually, most people with dementia will need 24-hour care. This might be at home with the help of loved ones or in-home nurses and aides. If you choose to go in that direction, make sure everyone on your care team understands the physical and emotional responsibilities of caring for someone with dementia.
For more comprehensive care, you might consider a group home or a retirement community that offers memory care facilities. These specialized services offer comfortable, flexible living environments for people with dementia, letting them practice social skills and independence in a controlled, supervised environment.
To learn more about care homes and other late-stage care options, see Long-Term Planning for People With Dementia.
9. Clarify end-of-life wishes.
Finally, make sure your friends and family know your end-of-life wishes while you are still able to make your own decisions. These conversations can be difficult and emotional, but having a plan in place will minimize stress for everyone involved when that day comes.
Some end-of-life considerations include:
Life-sustaining treatments, like respirators, feeding tubes, IV hydration, and surgeries.
Do not resuscitate (DNR) orders, legal instructions to emergency workers if you do not want to receive CPR, cardiac life support, or other life-saving measures.
Hospice care, care homes, group homes, and memory care facilities.
Autopsy, research, and organ donation.
Funeral plans, like a preference for burial or cremation.
For more information about end-of-life planning for dementia, see Long-Term Planning for People With Dementia or the Alzheimer’s Association’s online guide.
Where can I find more information about dementia?
To connect with doctors, nonprofits, and research organizations, use the Ability Central Service Locator tool. This nationwide database provides contact information for organizations who serve people with disabilities like dementia.
Ability Central offers multiple resources about dementia and dementia care, like:
Additional Information
The content provided in this article is for informational purposes only and is not intended as a substitute for legal, medical, or other professional advice. While we strive to provide accurate and up-to-date resources, some information may become outdated or incomplete. Always consult with your provider about personal medical concerns.
