It should come as no surprise that dementia doesn’t just affect the individual – it is very much a family diagnosis. The effects of cognitive disease extend beyond the person to their spouse, children, caregiver and anyone who loves them. If your loved one has recently been diagnosed with dementia and is facing the increasing challenges of memory loss, you’ll find yourself learning to cope with changing family dynamics, evolving relationships, new responsibilities and an ever-changing array of emotions.
“A diagnosis of dementia brings a lot of uncertainty for both the individual and their loved ones,” says Devon Sicard, Executive Director of Bridges® at Pembroke, a memory care assisted living community in Pembroke, MA. “It’s important to remember that loved ones will need to cope with the diagnosis just as much as the individual who has been diagnosed. Everyone touched by the disease will need to navigate this situation with caring, understanding and support.”
The Effect of Dementia on Your Loved One
Dementia (a catch-all term that encompasses Alzheimer’s disease, vascular dementia and others) is a disease that causes cell death in the brain. This leads to memory loss, loss of physical abilities and behavioral or personality changes. Over time, family members may feel as if they are “losing” their loved ones to the disease, which is perhaps the hardest thing for loved ones to face.
According to the Alzheimer’s Association®, here are some things that individuals with dementia want their loved ones to know:
- I’m still the same person I was before my diagnosis.
- My independence is important to me; ask me what I’m still comfortable doing and what I may need help with.
- It’s essential that I stay engaged. Invite me to do activities we both enjoy.
- Don’t make assumptions because of my diagnosis. Dementia affects each person differently.
- Ask me how I’m doing. I’m living with a disease, just like cancer or heart disease.
- I can still engage in meaningful conversation. Talk directly to me if you want to know how I am.
- Don’t pull away. It’s OK if you don’t know what to do or say. I value your friendship and support.
As a loved one of someone with dementia, it’s important to remember that your loved one still remains the same person they were – and it’s still possible to have meaningful conversations, interactions, experiences and moments with your loved one, even as the disease progresses.
Dementia’s Effects on Loved Ones
If you’re a loved one who will become the primary caregiver of the individual with dementia, dementia will have a significant effect in your life. As a caregiver, you will eventually shoulder more and more of the responsibility of caring for your loved one (though, thankfully, not all at once). This can cause a variety of emotions, because it requires you to deal with shifting roles and relationships. Spouses who shoulder the caregiving role may mourn the loss of the future they’d planned, as well as grappling with becoming more of a caregiver and less of a romantic partner. Adult children may find themselves struggling with resentment that they now have to be the “parent” to their parent.
Every family member will cope with a dementia diagnosis differently. Just as with the grieving process after someone dies, there is no specific timeline as to when you or someone else will come to accept the new normal. The following are a few strategies that you can use to begin the coping journey of coming to terms with your loved one’s diagnosis.
Give yourself time to grieve. A dementia diagnosis is much like a diagnosis of a terminal illness with regards to how it affects peoples’ emotions and feelings. It’s not uncommon for loved ones to go through the stages of grief – denial, bargaining, anger, depression – sometimes all at once. There is nothing wrong with feeling these emotions. In fact, it’s important to give yourself and others time to fully process what’s happening, experiencing the feelings that well up and allowing yourself the opportunity to accept the circumstances and what’s ahead. It’s also important to note that grief can come in waves, and that’s okay, too. “Accepting” the diagnosis doesn’t mean that everything is perfect and fine. It’s simply acknowledging the reality and finding ways to move forward in a helpful, healthy manner.
Hold on to the past. Reminiscing is a powerful tool that allows everyone involved in the dementia journey to remember, to bond and to share. One way of coming to terms with your loved one’s disease is to remember the important, significant memories you have with them. Even though these memories will fade for your loved one, the emotions you feel when you think of them will help carry you through and allow you to see your loved one as the person they are – not as their disease.
Be present in the moment. Following a diagnosis, it’s easy to start thinking about everything that will come to pass. While it is important for you and your loved one to plan ahead with things like healthcare and living options, financial aspects and other long-term care plans, it’s not healthy or helpful to spend lots of time worrying about the future – or, worse, acting if the future has already happened. Take a deep breath and recognize where you are in this particular moment. Remember that there still remain many days and many opportunities for you and your loved one to bond, share experiences and make meaningful memories. By taking each moment as it comes, you’ll reduce your stress level and feel more grateful overall, too.
Take care of yourself. Self-care is incredibly important when your loved one has dementia. This is especially true if you are a primary caregiver. Remember to eat a healthy diet, get plenty of exercise and sleep and take time each day to do something enjoyable – even if it’s as small as reading a book for 10 minutes before you go to bed. Burnout is a real issue for caregivers and loved ones, and it’s important to take good care of you in order to remain the best possible caregiver for your loved one.
Expert, Life-Enriching Memory Care
Bridges® by EPOCH at Pembroke provides memory care assisted living that is comfortable, positive, safe and engaging. Exclusively dedicated to caring for those with Alzheimer’s disease and other forms of dementia, our community promotes a wellness-focused lifestyle that emphasizes dignity and individual preferences. Our memory care professionals receive specialized, ongoing training designed to help residents maximize their independence in a secure, calm environment – making a truly positive impact on the lives of our residents.
Inspiring Programs for All Stages
Bridges® by EPOCH at Pembroke’s services are designed to recognize and adapt to the unique challenges and individuality of each resident, while ensuring comfort and safety. We believe in a full-service approach to care and provide personalized attention and programming for residents in every stage of memory loss.
Purposefully Designed Community
Within a beautiful residential design, Bridges® by EPOCH at Pembroke provides everything residents with Alzheimer’s disease and other forms of dementia need to enjoy comfort, familiarity and security. Soft colors, directional cues, aromatherapy and interactive life stations create a soothing and secure environment where residents feel at home.
Contact us today to learn more.