(BPT) - Receiving an Alzheimer's diagnosis is never easy — it's life changing, not only for the person receiving the diagnosis but for their family members as well. The disease can exact a devastating toll on family relationships unless everyone pitches in to support caregivers and take steps to secure the financial future of the person with Alzheimer's. These are a few important takeaways from a new survey by the Alzheimer’s Association.
The survey of more than 1,500 American adults, including current and former caregivers for someone with Alzheimer’s, found that while 91 percent agreed caring for someone with Alzheimer’s or dementia should be a team effort, too many caregivers feel they’re not getting the support they need. Eight-four percent of caregivers said they would like more support, particularly from family, and 64 percent felt isolated and alone.
“Caring for someone living with Alzheimer's can be overwhelming and too much for one person to shoulder alone," says Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association. “Without help, caregivers can end up feeling isolated, undervalued and lacking support from the people they want to be able to turn to for help.”
The survey found relationships between siblings to be the most strained, stemming from not having enough support in providing care (61 percent) as well as the overall burden of caregiving (53 percent). Among all caregivers who experienced strain in their relationships, many felt like their efforts were undervalued by their family (43 percent) or the person with the disease (41 percent). Contributing to the stress were a lack of communication and planning; 20 percent of survey respondents said they had not discussed their wishes with a spouse or other family member, and only 24 percent had made financial plans to support themselves post-diagnosis.
Tips to help families navigate Alzheimer's
Despite its seriousness, some families grew closer following an Alzheimer's diagnosis, according to the survey. More than a third of those surveyed said caregiving actually strengthened their family relationships, and two out of three said they felt the experience gave them a better perspective on life. Relationships between spouses/partners benefited the most.
The Alzheimer’s Association online Caregiver Center offers wide-ranging resources to help families navigate the many challenges associated with the disease. During June — Alzheimer's & Brain Awareness Month — the Association is offering tips to help mitigate family tensions and relieve caregiver stress, including:
* Communicate openly — Establishing and maintaining good communication not only helps families better care for their loved one with Alzheimer’s, it can relieve stress and simplify life for caregivers, too. Families should discuss how they will care for the person with Alzheimer’s, whether the current care plan is meeting the person's needs, and any modifications that may be warranted.
* Plan ahead — In addition to having a care plan for how to cope as the disease progresses, it’s important to have a financial plan as well. The survey found 70 percent of people fear being unable to care for themselves or support themselves financially, but only 24 percent have made financial plans for their future caregiving needs. Nearly three-quarters said they would prefer a paid caregiver, but just 15 percent had planned for one, even though Alzheimer’s is one of the costliest diseases affecting seniors. Enlisting the the help of qualified financial and legal advisers can help families better understand their options.
* Listen to each other — Dealing with a progressive disease such as Alzheimer's can be stressful and not everyone reacts the same way. Give each family member an opportunity to share their opinion. Avoid blaming or attacking each other, which can only cause more stress and emotional harm.
* Cooperate and conquer — Make a list of responsibilities and estimate how much time, money and effort each will require. Talk through how best to divide these tasks among family members, based on each person’s preferences and abilities. If you need help coordinating the division of work, the Alzheimer Association’s online Care Team Calendar can help.
* Seek outside support — Families can benefit from an outside perspective. Connect with others who are dealing with similar situations. Find an Alzheimer’s Association support group in your area or join the ALZConnected online community. You can also get around-the-clock help from the Alzheimer’s Association Helpline at (800) 272-3900.
"Having the support of family is everything when you’re dealt a devastating diagnosis such as Alzheimer’s,” says Jeff Borghoff, 53, a Forked River, New Jersey, resident who has lived with younger-onset Alzheimer’s for two years. “My wife, Kim, has been my rock as we navigate the challenges of Alzheimer’s. It’s easy to want to shut down following a diagnosis, but that’s the time when communication within families is needed most.”