Alzheimer’s disease and other forms of dementia are illnesses that affect not just the individual, but the rest of their family as well. Many experts consider family members to be the “second victims” of a diagnosis of Alzheimer’s, and are now exploring ways to help “treat” them as well as the individual who has been diagnosed with the disease.
“The ripple effect that Alzheimer’s has on families can be challenging in many ways,” says Alicia Seaver, Vice President of Memory Care Operations & Certified Memory Impairment Specialist for EPOCH Senior Living. “This is especially true for family members who become primary caregivers. Besides balancing their normal day-to-day responsibilities of career, family and self-care, family caregivers suddenly find themselves shouldering the burden of around-the-clock support and care for their loved one with dementia. Although this may be a somewhat easy task at the beginning of the disease, it can eventually become an exhausting and even dangerous burden.”
Besides family caregivers, says Alicia, Alzheimer’s affects the relationships and life quality for other loved ones as well. “Spouses, adult children, friends and close relatives will also experience shifts as their relationship to the individual with dementia change,” she says. “It’s vital for everyone in a family to understand what a diagnosis of dementia means for both the individual and the family as a whole. By understanding the risks, consequences and realities of what lies ahead, it will be easier to band together and develop a plan for care – making life less stressful, hopefully less challenging and less exhausting for everyone involved.”
How Alzheimer’s Affects Different Family Members
The people who are most affected by a diagnosis of Alzheimer’s, besides the individual themselves, are spouses and adult children. The amount of time it takes to adjust to the new reality will vary from person to person depending on their relationship, emotional state and the new responsibilities that the diagnosis means for them.
Spouses will more than likely have very strong emotions and reactions following a diagnosis because their entire life course is now changing. A spouse will more than likely be the primary caregiver for the individual with dementia. They may be worried about the future, which will now be different from what they had planned. They may have their own health issues that have to be addressed, or they may end up having to shoulder unfamiliar tasks – for example, if a wife is diagnosed with Alzheimer’s, the husband may need to take on house-related chores. Spouses will also have to accept and come to terms with that the person they love will eventually change and there may come a time when their loved one no longer recognizes them.
Adult children may find themselves struggling with the role reversal that comes from caring for a parent. They may become frustrated or angry with the burden of care, or be overwhelmed by their own responsibilities or may even stubbornly deny that anything is wrong with their parent. Adult children may also not fully understand the realities of the disease and may inadvertently put their loved one in harm’s way due to misunderstanding the situation.
Besides the emotional aspects of a diagnosis, here are some of the effects that Alzheimer’s can have on family members:
- Increased risk of illness. Stress can cause physical issues and result in worse overall health for an otherwise healthy individual. Caregivers, in particular, are at risk of a variety of physical issues and illness including cardiovascular problems, poor sleep patterns, slower wound and illness healing, a lowered immune system and higher levels of chronic health conditions.
- Social isolation. As stress and responsibilities grow, family members and caregivers can avoid or reduce the amount of time they spend connecting with friends and other forms of social report. They also may give up favorite hobbies and activities, reduce the amount they work and end up spending more and more time away from others.
- Poor quality of life. Emotional well-being can be significantly diminished. Caregivers report higher levels of psychological distress, emotional issues and poor quality of life than those who aren’t caregivers. These issues can result in serious problems if left unchecked.
- Financial difficulty. Alzheimer’s disease is not a cheap disease to treat. The costs associated with caring for someone with cognitive impairment are significant and continue to grow throughout the course of the disease.
How to Help Families Cope
Families should band together following a diagnosis of Alzheimer’s, says Alicia. “Family members may wish to have a meeting with the individual who’s been diagnosed to discuss next steps, find resources, build supports and find solutions for his or her needs,” she says. “While this can be distressing for everyone involved, taking steps as early as possible can help everyone in the family lay the groundwork for the support, assistance and information needed for the journey ahead.”
Alicia cautions family members to avoid “taking over” the situation, however. “Remember that, no matter how far advanced your loved one’s Alzheimer’s is, this is their life and they have agency to make their own choices as much as they can,” she says. “Since Alzheimer’s is a progressive disease, your loved one will still be capable of managing decisions and tasks for some time – although what those tasks are will depend on his or her individual journey. Your loved one should be included on any decision that relates to his or her quality of life or future.”
If needed, says Alicia, it may be beneficial to meet with a third party, a mediator or a care manager who can help families navigate the situation and help identify solutions while mitigating any heightened emotions. This can help not only manage family feelings, but provide the best possible care for your loved one with dementia.
“It’s important to remember that quality of life – for you and the person with Alzheimer’s – is the ultimate goal here,” says Alicia. “While a diagnosis is life-changing, it doesn’t mean that life stops. There still remain opportunities to enjoy life, make memories and have a high quality of life for you and your loved one.”
Exceptional Care. Fulfilling Lifestyle.
Bridges® by EPOCH at Hingham provides assisted living and 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.
Dedicated Memory Care
No matter what level of care or service is needed, residents and families can rest assured that our programs address the various stages of memory decline, allowing residents the opportunity to age in place.
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At Bridges® by EPOCH at Hingham, our 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 a high level of personalized attention for every resident through all stages of memory loss.
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