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A Family’s Journey Through a Dementia Diagnosis

Dementia is a disease that doesn’t affect just one person. It ripples out to touch the lives of friends, family and loved ones, too. In fact, experts have taken to calling immediate family the “second victim of dementia” or the “invisible patients.”

“For so many years, the focus has been on treating the individual with dementia and finding ways to best care for them,” says Eric Kessler, Executive Director of Bridges® by EPOCH at Westwood, a memory care assisted living community in Westwood, MA. “As experts in memory care, we’ve seen firsthand that many, many lives are profoundly affected by the dementia journey. In order to provide comprehensive wellness to the individual with dementia, we also need to reach out to their primary caregivers and loved ones to give them assistance, support and care.”

Eric says that dementia doesn’t affect every family member the same, and each person’s journey is uniquely different. “Primary caregivers will experience the most effect that dementia has on their everyday lives,” he says. That’s because these caregivers end up shouldering the ever-increasing burden of caring for all aspects of their loved one’s care as well as their own (which can easily become overlooked). But primary caregivers are not the only ones affected.

“If the primary caregiver is married or has children, those relationships can suffer because so much effort is being focused on the individual with dementia,” says Eric. “Other immediate family members can suffer in different ways. Other adult children may feel guilty if they live far away because they can’t do as much, for example. Or perhaps they begin withdrawing because they don’t know how to interact with their loved one, resulting in guilt and more stress for everyone.”

Understanding that these emotions are natural and normal and developing coping strategies will help family members better manage what lies ahead. By developing a plan for care and organizing resources, the more cohesive your loved one’s care will be.

How Dementia Affects the Family

While caregivers feel the effects of dementia the most, anyone in the circle can experience difficulty. Here are some of the major ways that a dementia diagnosis affects family members and loved ones.

  • Getting sick more frequently. Stress causes our immune systems to go haywire, as does depression and anxiety – all emotions that are common to feel during this time. Unfortunately, this can lead to poor sleep, high blood pressure and cardiovascular issues as well as a heightened risk for ulcers, diabetes, arthritis and anemia.
  • Becoming depressed and isolated. With all the difficulties facing them, it’s easy for family members to become anxious and depressed, which can cause them to pull away from social support. This turns into a vicious cycle of increasing depression, despair and stress.
  • Struggling financially. Caring for someone with dementia is not cheap. From tests to doctor’s visits to medicines and home care, the price tag can climb higher each year. Plus, caregivers often have to quit or reduce their hours at their jobs, causing an indirect loss of earnings.

Tips for Navigating the Dementia Journey

The old saying goes that “it takes a village.” This is definitely true when it comes to navigating all aspects of your loved one’s dementia journey. Once a diagnosis has come in, it’s time to rally the troops, get on the same page and move forward with one goal in mind: providing the best possible care and well-being for your loved one.

  • Share responsibilities. While one person may be designated to be the primary caregiver, everyone in the family should share some of the responsibility in order to keep others from becoming overwhelmed or burnt out. Consider each person’s strengths and talents and divvy up roles accordingly. Perhaps one family member can manage the finances, while another can be responsible for medical scheduling and decision-making. Another may be perfectly suited for researching care facilities and treatment options, while another will handle errands, chores and be the point-person for respite care.
  • Communicate regularly. You really never can communicate too much during this experience. Hold family meetings regularly to discuss issues such as care options. Meetings can be held in person, via Skype or even in a group text string – whatever works best for your family. By holding regular meetings, you’ll be able to address issues as they arise (and hopefully before they become urgent) and everyone will be more prepared for any changes ahead. As needed, invite members of the care team (such as a home healthcare aide), and consider having a third party like a counselor or clergy member there if required for support or mediation.
  • Be honest with each other. It’s hard to make any sort of concrete, beneficial plans if people are swallowing their true emotions, concerns or feelings. All members of the family should be encouraged to talk about their feelings in a constructive manner – emphasis on constructive. It’s okay to say you’re angry or stressed, but do so in a way that doesn’t blame or shame anyone else. Be sure to listen to other family members, too.
  • Don’t criticize. This is a stressful time, and it’s easy to feel angry or critical of another’s way of handling things. Remember that there is no one “right” way to provide care, and weigh your reactions accordingly. Keep your primary goal in mind: supporting your loved one with dementia in any way possible. Listen to other family members and be supportive, especially for those who are the primary, day-to-day ones responsible for care.
  • Consider seeing a counselor. Even if you and your family are the most well-adjusted, collaborative and close-knit individuals ever, you may need or simply want a third party to help resolve conflicts or cope with stress, anxiety or warring emotions. Each individual family member should be encouraged to seek assistance as they wish, whether through a support group, a counselor or even a therapist. This can be done as a group or individually – in fact, you may want to explore both avenues. By bringing in a third party who’s knowledgeable about what you’re facing, you can better work through conflicts, explore your emotions and find a way forward through the speedbumps to help you and your family members move on to more important things.

“Providing a united front in the face of a dementia diagnosis is the best gift you can give your loved one and your family,” says Eric. “At Bridges® by EPOCH at Westwood, we understand the challenges facing you at this time and are committed to providing support, care and understanding to all members of the circle. We are there for our residents and their families throughout the entire dementia journey, and provide support in whatever way we can – even if your loved one doesn’t live in our community. We support all caregivers and family members and are always available for advice and information.”

Personalized Lifestyle

Bridges® by EPOCH at Westwood provides assisted living memory care that is comfortable, positive, safe and engaging. Exclusively dedicated to caring for those with Alzheimer’s disease and other forms of dementia or memory impairment, we’ve created a wellness-focused lifestyle that promotes dignity and individual preferences. Our memory care professionals receive specialized and 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 each and every day.

Personalized Services

Our care and services are designed to recognize and adapt to the individual challenges and personalities of our residents, while making sure they are comfortable and safe. We believe in a full-service approach to care and provide a high level of personalized attention for every resident through all stages of memory loss.

Our Amenities

Bridges® by EPOCH at Westwood features a distinct design, providing residents with everything they need to enjoy comfort, familiarity and security. Our community is built specifically to benefit those with Alzheimer’s disease and memory loss … so we use soft colors, directional cues, aromatherapy and interactive life stations to create a soothing, safe environment where residents feel at ease.

Contact us today to learn more. 

Learn More About Bridges®

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