Have you been recently diagnosed with Alzheimer’s or dementia? Perhaps your loved one has shared news of their diagnosis with you. Either way, receiving such news can lead to a wide range of emotions and raise many questions.
So, where do you go from here?
Fortunately, there are many actions you can take to help cope with this life change. With more than 6 million Americans living with Alzheimer’s disease, you or your loved one are not alone. Accordingly, there are resources and support systems you can turn to.
We’ve compiled some of these resources below, starting with action steps to take if you are the person who has been diagnosed. There is also additional information family members and/or caregivers can utilize for themselves, too.
Steps to Take if You’ve Been Diagnosed with Alzheimer’s or Dementia
1. Give Yourself Time to Process What’s Happening
Whenever you are faced with a life-altering event or change, it takes time to process what has happened. Experiencing different (and even conflicting) emotions is a natural reaction ― you may be feeling:
- In denial
These emotions are also common in people who are grieving. In reality, coping with an Alzheimer’s or dementia diagnosis is a form of grieving ― there is loss involved. Just like with the grieving process, you must give yourself time to work through these feelings; running from them will only delay your acceptance of the problem. Instead, try to embrace your feelings as best you can and allow yourself to process your thoughts. Seeking help from a therapist can also be beneficial.
How much time will you need? Of course, the answer is different for everyone. Don’t place unfair expectations or a time limit on yourself ― just focus on making incremental progress.
2. Employ Strategies to Help You Accept Your Diagnosis
There are multiple strategies you can use to help you on your way to the acceptance stage. Some of them are actions you can take yourself, and others involve social interaction. Here are some ideas to get you started.
- Learn more about Alzheimer’s and dementia. If you haven’t done so already, begin doing your own research on Alzheimer’s disease and dementia. Come up with several questions you may have, and see if you can find the answers to some of them. The Alzheimer’s Association’s website is a great place to start. Increasing your own awareness can help you (and others) overcome the stigma around Alzheimer’s.
- Write in a journal. Since the moment you learned of your diagnosis, you’ve probably had lots of thoughts bouncing around in your mind. Journaling can serve as an outlet, as well as a way to organize your thoughts. You can journal about anything you want ― memories, worries, inspiring quotes, or something else. There’s something freeing about putting pen to paper and preserving your words in a tangible way.
- Speak openly with others. Whether it’s friends, family, a counselor, or someone else experiencing cognitive decline, connecting with others about your thoughts, feelings, and plans can be cathartic. Engage in two-way conversations and seek advice that has worked for others. Consider joining an online forum, such as this discussion board hosted by the Alzheimer’s Association, or a local support group for those with early-stage Alzheimer’s or dementia.
- Consider volunteering for a clinical trial. There are hundreds of clinical trials on Alzheimer’s disease and related dementias underway around the globe, including 271 funded by the National Institute on Aging. Consider volunteering for a clinical trial near you and joining the fight against Alzheimer’s and dementia.
3. Adopt or Maintain Healthy Lifestyle Choices
Being diagnosed with Alzheimer’s disease or dementia doesn’t mean that there’s nothing you can do to preserve your quality of life for as long as possible. Researchers suggest that there are ways to potentially slow the progression of Alzheimer’s by making healthy lifestyle choices, such as:
- Staying physically active, such as taking daily walks
- Maintaining a healthy diet
- Staying mentally and socially engaged
Additionally, make sure to set and attend medical appointments regularly. You will likely see multiple healthcare providers, which may include your primary care physician and various specialists (geriatric psychiatrist, neurologist, etc.).
4. Start Planning for the Future
Preparing for the future now will allow you to be a part of the decision-making process, and will spare your family from having to make difficult choices on your behalf.
Here are some proactive measures you can start working on now:
- Update legal documents. If you haven’t done so already, take the time to update important legal documents or directives to ensure your wishes are carried out. These could include:
- Living will
- Power of attorney
- Medical orders
- Living trust
- Plan for future care. Although you may not need professional care for some time, it’s never too early to start planning. On average, those diagnosed with Alzheimer’s disease live between three and 11 years; however, some people live 20 years or more. Making decisions about care early ensures you’ll get the right care at the right time. Consider your answers to questions such as these:
- What communities or options are you interested in?
- What services are available in these communities?
- How far in advance do you need to secure a residence?
Supporting a Loved One with Dementia
If you are a family member and/or caregiver to someone who has just been diagnosed with Alzheimer’s disease or dementia, you will face a unique set of challenges as you support your loved one.
Many caregivers underestimate the toll that caring for a loved one with Alzheimer’s can have on their physical and mental well-being. Being realistic about how much time you have available, learning to ask for help, and prioritizing self-care are all important factors in avoiding caregiver burnout.
Resources for Dementia Caregivers in New York
You may also find it helpful to learn more about dementia and ways you can offer support, both now and in the future. In addition to the action steps above, you may find the following resources, which are tailored to caregivers, useful:
- National Institute on Aging - how to make your loved one’s residence safer
- Alzheimer’s Association - accepting the diagnosis
- National Institute on Aging - managing personality and behavior changes
- Local support groups for caregivers
Your Role as a Caregiver
As your loved one’s disease progresses, you’ll likely find yourself assuming different roles.
- In the early stages of caregiving, you’ll likely offer support and a listening ear to your loved one. They may still do activities like go to work or drive. You can also help them make decisions about future care, legal needs, and more.
- In the middle stage of caregiving, your loved one may require additional support with some of the activities of daily living. This stage is typically the longest and may last for years.
- In the late stage of caregiving, your loved one will likely need round-the-clock care and supervision. During this stage, you can still find ways to connect with your loved one through simple activities like listening to music or sitting outdoors together.
Throughout all of these stages, it’s important to remember that your loved one still needs to experience love, support, and dignity.
More Resources on Alzheimer’s Disease and Dementia
Learn more about Alzheimer’s disease and dementia in some of our other resources, including tips for overcoming dementia fatigue and ways people with early-stage dementia can maintain their independence.