How to Support Loved Ones Struggling with Dementia and Alzheimer’s
By Vassar Byrd, CEO of Rose Villa Senior Living
How to Support Loved Ones Struggling with Dementia and Alzheimer’s
Having a close family member diagnosed with dementia will have a huge impact on your life – there is a lot to learn through this journey. You will have some brilliant moments and as well as heartbreak. With a little preparation you can make this a less painful and more positive experience. Here are a few steps you can take to ensure your entire family feels empowered and supported while navigating the complexities of the dementia and Alzheimer’s:
Don’t wait, start planning now
It’s important to educate yourself on dementia and Alzheimer’s early and have access to a strong network of medical providers. Assess whether your parent’s current doctor is appropriate going forward. Do they have expertise in aging? Are they creative and collaborative with you? Do they communicate well?
Have a frank conversation with your family and any others who will be involved in the circle of care. Talk through different scenarios, like how you respond if your loved one can’t remember who you are, or ways to engage them if they are fixated on something, or not oriented to time and place. Within your support system, discuss different preferences in terms of care and what responsibilities each person is willing to take on. Plan on regular updates and group meetings – maybe over dinner, or ice cream. It’s important to keep the communication, expectations, and ideas flowing. This is hard work.
As the burden of care increases, consider locating a geriatric case worker who can help you manage. Don’t wait to do the homework on communities that provide onsite care. There are many living options at many varying price points. As the disease progresses, their needs will change.
Celebrate the wins
Let’s be clear that dementia is not contagious! Continuing regular contact is the best step you can take to support your loved one, as it is easy to become isolated. It becomes harder and harder for the person with the disease to initiate activities, and even conversation, on their own. Do things together that you know they love. Keep it simple – increased complexity, noise, large crowds of people, are all extremely fatiguing and worsen the ability of the person with dementia to communicate. One-on-one and small group activities are best.
The most you can do is love them, accept them, and be present. There are gifts here: the parent with whom you had a difficult relationship becomes more loving; you finally feel empowered to tell your older brother how much you admire him; you see your own teenage children stepping up with compassion and kindness with your father. Be awake to these blessings amid this very hard disease and long goodbye to the person you love.
Communication is key
You have limited time. You can create moments of connection, one-on-one, doing slow and quiet things. Even a person who is very far along in the disease can emerge from their isolation and talk about their mother in the photograph, or when they first heard that song, or the best way to make meatballs. Those are treasured moments. While the window is open, tell them what they mean to you. Listen to what they say and know they are talking with their smile, as much as with their words. Notice how they reach for you with their hand and how their eyes light up when they see you. Recognize their fatigue and don’t call them out with “Remember me?” Instead try, “Hi, it’s Vassar, I am so happy to see you.” Remember, they are changing, and it is not their fault.
As you communicate, be aware that what most people pick up is through your body language and your tone of voice. Only a small fraction comes from the actual words you say. When you speak to someone with dementia, be sure they can see your face – get on their level, not above them – and radiate the emotional tone you want to communicate. If you are in a bad mood, postpone the visit! Be calm, warm, speak clearly, and do not be in a rush. Try not to ask or say more than one thing at a time. They cannot string together a series of commands or questions.
While this transition is tough, it’s important to make time for yourself too. Find time to talk to your friends, family, colleagues whomever you feel close to. The tragedy of our lives can be a hysterically funny story – where you laugh and cry at the same time – that brings tremendous connection to others. We are all on the same road. Let’s share it.
