Receiving a dementia diagnosis is overwhelming. There are so many things to think about and so many questions to ask. If you have recently been diagnosed, or if you have a loved one who has recently been diagnosed, it can be hard to know what to do next.
Arden Courts ProMedica Memory Care National Director Dionne ThompSon, BSN, RN, CDP, CADDCT, shares these tips to make life after a dementia diagnosis a little easier.
1. Take Care of Yourself
“Being diagnosed with any type of dementia can invoke a whirlwind of emotions, including fear, confusion, sadness and even anger,” says ThompSon. “It’s not uncommon to feel overwhelmed by the uncertainty of the future.”
Those feelings can be felt by people living with dementia, as well as those caring for someone with dementia.
It’s extremely important to take care of yourself during this difficult time. Caring for your mental and emotional health is essential. Consider engaging in activities that may help promote relaxation as well as joy. ThompSon recommends hobbies, exercise and social interaction. A support group, either in person or online, can also provide a sense of comfort and community.
“If the feelings are really complex, speaking with a mental health professional can help manage those feelings, even for caregivers as they think about caring for their loved one moving forward,” says ThompSon.
2. Talk with Your Health Care Provider
It’s normal to have many questions after a dementia diagnosis. It’s critical to ask these questions so that you can better understand the condition and make plans for the future.
ThompSon recommends considering asking some of the following questions:
- What type of dementia do I have and how will it progress over time?
- What treatment options are available and what are their benefits as well as the side effects?
- How can I manage my symptoms or my loved one’s symptoms effectively?
- Are there any lifestyle changes that I should make to slow the progression of the disease?
- What resources and support services are available for those with dementia as well as caregivers?
3. Share Your Dementia Diagnosis
“Sharing a dementia diagnosis with friends and family can be tough, but I think it’s important to be honest and direct,” shares ThompSon. “Be prepared for a range of reactions and emotions to come from others.”
ThompSon suggests preparing for this conversation with a close friend or counselor before having the conversation with family members. This can help you prepare for the discussion. Then, choose a quiet and comfortable setting to speak with your family. Provide information about the condition and diagnosis, and encourage them to ask questions.
Pamphlets and websites from leading organizations, such as the Alzheimer’s Association, can help put information into laymen’s terms so it’s easier for your family to understand. You can also use the questions you asked your health care provider as a starting point.
“It’s important to understand that just as you had a wide range of emotions and feelings about the diagnosis, your family is going to have the exact same feelings,” reminds ThompSon. “Especially if other family members haven’t been caring for your loved one, they may be unaware of the changes that have occurred over time. Hearing about the diagnosis can be shocking and overwhelming.”
4. Address Legal and Financial Matters Early
It’s important to address legal and financial matters early. If your loved one with dementia has previously shared their wishes with you, you may be able to put it in writing even if they can’t verbalize this anymore. Having them be part of the process is important if they are able.
Here are some documents to consider creating or updating:
- Advance directive to assist with future medical care.
- Living will to express health care wishes and specify end-of-life care
- Durable power of attorney, so that financial affairs can be properly managed by the person selected to do so.
- HIPAA release form, so that health care providers can share information with designated family members or caregivers.
- Will to determine the distribution of assets and property.
5. Find Support and Resources
Equipping yourself and your loved one with a support network early can help you have access to resources when you need them. Whether you are seeking at-home or assisted living care, resources are often available through assisted living and memory care communities. Consider reaching out to those communities for support.
Arden Courts, for example, offers support groups, educational events, resources and an e-newsletter to help those with dementia and their families with the diagnosis.
“It is never too early to reach out,” assures ThompSon. “The moment you notice signs and symptoms of dementia, you want to educate yourself and find resources to help be proactive with this life-changing disease.”
Virtual resources can be especially helpful for those who may not be comfortable leaving their home, so don’t forget to search for and ask about online opportunities. The Alzheimer’s Association, for instance, can provide many resources for those looking for support.
“There are many resources, as well as people and family members and communities, that are dedicated to supporting those with dementia and their families,” says ThompSon. “Many people don’t realize the resources that are available to them, so they travel this journey alone. It’s an extremely difficult journey, especially for caregivers, if you don’t have the proper support and recommendations on how to care for your loved one and yourself.”
6. Consider Respite Care
Respite care is a service that can be beneficial for a person with dementia as well as a caregiver. Unfortunately, it’s often underutilized.
“Caregivers often face physical, emotional and mental exhaustion from the demands of caring for someone who has a form of dementia,” explains ThompSon. “Having downtime can help prevent burnout, reduce stress and improve the overall health for the caregiver. It can help them be more compassionate in their role as they continue to care for their loved one.”
For those with dementia, respite care can give them an opportunity to interact with new people, engage in new activities and enjoy a safe environment that is cognitively beneficial. Respite care settings often offer structured programming that they may not experience in a home setting.
7. Tour Memory Care Communities Early
Depending on the type and stage of dementia, extra support for daily living may be needed after a diagnosis. But even in the early stages of dementia, touring an assisted living or memory care community will equip you with resources and knowledge. You’ll feel more prepared long term as the memory loss and dementia progresses.
It’s common for spouses and children to feel guilty about placing their loved one in a community. ThompSon reminds families that their commitment to care for their loved one hasn’t changed.
“You’re not giving up or giving over the care. You’re keeping that commitment, but you’re allowing a partner to co-care or co-partner with you in caring for your loved one,” she explains.
There are many ways caregivers and family members can continue to be an important presence in their loved one’s lives. Having the support of a community dedicated to dementia care can help family members connect with their loved one in more meaningful ways.
Taking a Diagnosis One Step at a Time
A dementia diagnosis is life changing. If you’re a caregiver for someone who’s been recently diagnosed, try to approach this situation with as much empathy, patience and a willingness to learn as you possibly can. Understand that your loved one is experiencing a range of emotions and cognitive changes. Regularly check in on your loved one and offer them support without being overbearing. The role of caregiver can be extremely demanding, so remember to give yourself grace throughout this journey as well.
If you’re someone who has recently been diagnosed, remember that a dementia diagnosis doesn’t mean you immediately lose your independence. Many people continue to lead fulfilling lives for years after their diagnosis. Try to focus on what you can do rather than what you can’t. Stay connected with your support network, continue to keep a positive outlook on life and take proactive steps to manage your health.
Most importantly, take comfort in knowing that you are not alone in this journey. Dementia health care providers, advocates, educators and families are ready to help you along the way with care and support.