Advice by Alicia: What to Expect After a Dementia Diagnosis of a Family Member

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 aseaver@bridgesbyepoch.com.

Q: My father was just diagnosed with dementia. What can we, the members of his family, expect as we navigate the changes that are to come? 

A: A dementia diagnosis is life-changing for both the individual with the disease and the people who love them. You and your loved ones are probably experiencing a variety of emotions: anger, fear, grief, confusion – even possibly relief. You’re also likely wondering what lies in store on the road ahead for everyone in the family as dementia progresses in the future.

First of all, give yourself a chance to reflect on the changing situation and feel what you need to feel. Everyone reacts to this diagnosis differently and there’s no “right” or “wrong” way to feel. While we talk about “accepting” the diagnosis, please understand that acceptance doesn’t mean pretending that everything’s okay or being completely fine with what’s happening. It simply means that everyone involved comes to an acceptance of the new reality and moves forward in a realistic, rational way. This can be easier said than done. Be kind to yourself and your loved ones and find someone to confide in – whether that’s a close friend, a therapist or a spiritual leader. 

It’s very common for family members to want to “leap into action” following a dementia diagnosis. This is admirable, but can sometimes be the least desirable course of action. Even though you now have a name for what your family member is experiencing, remember that the diagnosis doesn’t change who they are. While dementia is a progressive disease, it doesn’t mean that things have immediately changed. If your loved one is still in the early stages of the disease, not much may change in their life at this exact moment, and there are still many things they will be able to do. It just means that everyone has to be aware of the situation and make plans accordingly. 

Memory loss is a very personal journey, and no two people experience it in the same way. However, here are some things you can expect and anticipate following your loved one’s diagnosis:

You’ll need to make decisions sooner rather than later. Planning for the future is key following a dementia diagnosis. You’ll want your loved one to be as involved in the process as possible – after all, it’s their life you’re discussing. You and your loved one may wish to connect with elder care lawyers and other professionals who are experienced in dealing with situations such as this. Putting together advance directives, living wills, long-term care plans, financial and other legal documents will help you and your loved ones feel more empowered about what lies ahead – and give you peace of mind, too. 

Your loved one’s abilities will dwindle, but not as quickly as you expect. A dementia diagnosis doesn’t mean that suddenly your loved one isn’t able to do anything. In fact, it’s important to make sure he or she continues to do the things that they’re able to do. This helps empower them to stay as independent as possible and can help to stave off some of the disease’s progression. So don’t be too quick to take over. Be respectful, aware and engaged, and step in only when necessary – and after a discussion with your loved one. 

Knowledge is power. The more information you have about your loved one’s dementia, treatment and course of action, the easier it will be to keep them safe, healthy and happy. Keep in contact with everyone involved in your loved one’s treatments – from social workers and physicians to therapists and others. It’s also a good idea to educate yourself on the available services in your area, such as support groups, advocacy services, caregiver resources and memory care communities (who often provide a variety of resources to family caregivers, whether or not their loved ones live in the community). 

Your loved one will always be your loved one. As dementia progresses, your loved one will experience personality changes and can change a great deal. Although it is sad and upsetting to see the person you know change so much, remember that who they are at the core of their being will never change. He or she will always be your mother or father. The happy memories are still valid and important. Your loved one is still “there,” and even if he or she may not be able to articulate their feelings or thoughts, that history remains between you. Remember that, celebrate that, and it will help sustain you and your loved ones through this journey. 

Keep in mind that there will be good days and bad days for you, your family and your loved one with dementia. However, there’s still a lot of living to be done following a diagnosis. Although it’s a life-changing diagnosis, it’s not a life-ending diagnosis. Cherish the time you have together and take advantage of the moments you have and the memories you make. 

Enhancing Quality of Life

Bridges® by EPOCH 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.

We understand the concern families feel about ensuring quality of life for loved ones. That’s why, at Bridges® by EPOCH, we offer a wellness-centered lifestyle that focuses on reinforcing individual strength so residents enjoy heightened confidence and self-esteem. Ultimately, we provide everything residents need to thrive and rediscover a life with purpose.

Inspiration for Success

At our Bridges® by EPOCH communities, we work closely with families to gain necessary insight and deeper understanding into the lives of our residents upon admission. With this initial information, along with what our exceptional team members learn about our residents each and every day, we are best prepared to provide highly individualized programming for our residents.