Q. My dad was recently diagnosed with dementia. We are both still processing this diagnosis and what it means for our family, but we are wondering if you had any advice on what to do now that we know. Are there steps we should be taking?
A. I am so glad you reached out with this question. After a diagnosis, many families are often left in a state of shock and are unsure of where to turn. The right resources and guidance are crucial as you continue on your next steps in this journey. Below, we’ll share some of the steps you should be taking following this diagnosis and where you can reach out for support.
Steps To Take After a Dementia Diagnosis
1 | Get More Information About Their Form of Memory Loss.
There are many types of dementia, and not all of them have the same types of symptoms or stages as the disease progresses. For example, those diagnosed with Alzheimer’s disease may not deal with the same symptoms as those with vascular dementia.
This makes it important to learn about:
- Your loved one’s specific form of dementia
- What you can expect from their dementia’s progression
- What symptoms they may experience
- If there are any medical treatments available to manage their symptoms
2 | Talk to Family and Friends.
Though some of your family members may already know or suspect, it’s important to make sure everyone is aware of the diagnosis as soon as your loved one is comfortable with sharing that information.
Some may choose to tell immediate family members and close friends, while others may want to keep it to themselves as they process the next steps. There is no right or wrong answer, but the sooner the diagnosis is out there, the sooner both you and your loved one can receive support.
To ensure a successful discussion, make sure to:
- Plan out who you will tell and when
- Anticipate reactions and responses
- Find a calm and quiet place to talk
- Take your time explaining
- Prepare for questions
- Provide educational information
If you plan to talk to children about the disease, or if your loved one is frequently around children, find out how to share this diagnosis with them on our blog post: Advice by Alicia: Talking to Children About Dementia.
3 | Begin Planning for the Future.
If it’s in the early stages, you and your loved one should begin planning for the future. There are four aspects of planning you should prepare for: legal planning, financial planning, care planning, and end-of-life planning.
Legal Planning
This type of planning makes sure your loved one’s wishes are met as the disease progresses. Make sure to:
- Update existing legal documents
- Designate a power of attorney for healthcare
- Establish a durable power of attorney for finances and property
- Set up advance directives
Financial Planning
There will come a time when your loved one can no longer manage their finances. If possible, plan ahead by:
- Listing out all of your loved one’s assets and debts
- Naming who will be in charge of their finances
- Assessing your loved one’s benefits and insurance policies
Care Planning
As your loved one plans for the future, you’ll want to consider if home care or a move to a memory care community will be the best option for your loved one. For many, the answer is a memory care community where your loved one will receive dedicated support through each stage of the disease.
If your loved one prefers care at home, keep in mind it can get expensive and challenging for the family caregiver, especially as care needs progress and around-the-clock care eventually becomes necessary.
End-of-Life Planning
As care needs progress, it’s important to have a plan in place for the end-of-life. Consider whether:
- There are certain types of medical care your loved one does not want to receive
- Your loved one has a DNR
- Their funeral and burial plans are already completed
These are all crucial things to know and can make dealing with the future much easier for you.
4 | Seek Support for Yourself and the Person with Dementia.
No matter where you or your loved one is on this journey, it’s important to feel supported. This is why many join a support group. There are support groups for both caregivers and those with memory loss, those with particular forms of memory loss, and even those with early-onset Alzheimer’s disease.
At Bridges® by EPOCH, people with dementia – specifically early-onset dementia – can join our Early-Stage Support Group. Caregivers can join both our virtual dementia education sessions and caregiver support groups.
5 | Take Charge of Their Health.
Although they can’t reverse their memory loss, your loved one may be able to help slow the progression or maintain their brain health. Encourage them to take care of their health and overall well-being by:
- Eating a healthy and nutritious diet
- Exercising daily
- Staying socially involved
- Keeping their brain active
You can get a more in-depth view of how to do this on our previous Advice by Alicia blog, Healthy Aging Tips for Those With Dementia.
It is also important to consider whether your loved one would like to participate in a clinical trial. Not only could participating help to advance research, but your loved one could also gain access to cutting-edge programs and healthcare services.
We’re Here To Help
For more information about what to do after you receive a dementia diagnosis, or to learn more about Bridges® by EPOCH communities, visit our website.
About Alicia
Alicia Seaver is the Vice President of Memory Care Operations for EPOCH Senior Living and a Certified Memory Impairment Specialist. Every month, she addresses a specific issue related to memory and memory care. If you’re interested in hearing about a particular topic, please send a note to [email protected].
Enhancing Quality of Life
Bridges® by EPOCH memory care communities have been developed from the ground up to anticipate, meet and exceed the needs of our residents and their families. Our team of remarkable people, the exceptional care and services we offer, and the purposeful design of our buildings all combine to create the most rewarding, secure and nurturing lifestyle possible for our residents.
Bridges® by EPOCH communities are located in Connecticut, Massachusetts and New Hampshire, in the following towns: Norwalk, CT; Stamford, CT; Trumbull, CT; Andover, MA; Hingham, MA; Lexington, MA; Mashpee, MA; Pembroke, MA; Sudbury, MA; Westford, MA; Westwood, MA; and Nashua, NH.