While caring for an older family member – whether it be a spouse, parent or grandparent – can be a rewarding experience, it can also be a difficult and overwhelming task. This is especially true if your loved one lives with Alzheimer’s disease or other dementia-related illnesses. Being aware of some of the warning signs of burnout can help caregivers properly manage stress and protect themselves.
Caring for Caregivers
How to prevent caregiver burnout
(Family Features) While caring for an older family member – whether it be a spouse, parent or grandparent – can be a rewarding experience, it can also be a difficult and overwhelming task. This is especially true if your loved one lives with Alzheimer’s disease or other dementia-related illnesses.
Whether it’s out of love or obligation, caring for a chronically ill or disabled family member (and potentially his or her financial and legal interests) can come at the expense of the caregiver’s quality of life. In addition to maintaining a healthy, active lifestyle outside of caregiving responsibilities, it is important for those caring for a loved one to learn ways to avoid health hazards and stay well-informed of any changes in their loved one’s condition. Add work and children to care for to the equation and it’s a formula that can lead to stress, exhaustion and even potential health issues.
The additional duties often required to provide care for a loved one can lead to physical or emotional fatigue, often referred to as “caregiver burnout.” If you’re caring for an older adult, the Alzheimer’s Foundation of America recommends these tips to help manage stress before caregiving leads to burnout.
Know the signs of burnout. By the time many caregivers suspect signs of burnout, they’re likely already suffering symptoms related to their responsibilities. Being aware of some of the warning signs can help caregivers properly manage stress and protect themselves. Warning signs include:
Educate yourself about the disease. It’s likely the loved one you care for has several health problems, takes multiple medications and sees multiple health care providers to manage his or her conditions. As a first step in learning more about Alzheimer’s disease and other dementia-related illnesses, visit alzfdn.org or nia.nih.gov/alzheimers for information. Support groups, educational workshops, community resources and professionals can also help increase your understanding of the disease and what to expect so you can be a better-informed and prepared caregiver.
Be prepared for important decisions. Take care of financial, legal and long-term care planning issues early on to help reduce stress later. Try to involve the individual in decision-making if he or she is capable, and consider personal wishes regarding future care and end-of-life issues.
Build your care skills. Key skills for any caregiver include communication, understanding safety considerations and behaviors, and managing activities of daily living such as bathing, toileting and dressing. Some organizations and local hospitals may even offer classes specific to your loved one’s disease that can aid you in the process.
Develop empathy. Try to understand what it is like to be a person living with Alzheimer’s or dementia. Put yourself in the affected person’s shoes while also recognizing your own losses. Manage your expectations of your loved one and remain patient.
Ask for help when you need it. Reach out to medical and mental health professionals as well as family and friends. They can assist you when things get tough. In addition, there are typically programs, agencies and organizations in your community that can help manage the challenges of caring for older parents, grandparents, spouses and other older adults.
Advocate for and connect with your loved one. Take an active role in the individual’s medical care. Get to know the care team, ask questions, express concerns and discuss treatment options. Also remember to connect on a personal level through kindness, humor and creativity, which are essential parts of caregiving and can help reduce stress.
Think positive. Focus on the capabilities and strengths that are still intact and enjoy your relationship with your loved one while you are still together. Look for ways to include him or her in your daily routines and gatherings to make as many memories as possible.
Find more caregiver resources and tips at alzfdn.org.
Tips for Managing Caregiver Stress
Stress can affect anyone and caregivers may find themselves faced with additional stressors. To help manage stress and avoid caregiver burnout, keep these tips from the Alzheimer’s Foundation of America in mind:
Getting Help with Caregiving
Everyone needs a break from time to time, even caregivers. Look into respite programs for a chance to care for yourself. Types of respite include:
Adult Day Programs
Family and Friends
Photos courtesy of Dreamstime (Couple walking)SOURCE:
Alzheimer’s Foundation of America
(BPT) - Caring for someone with Alzheimer’s or other dementias is exceptionally demanding, and especially challenging. The caregiving needs of people living with Alzheimer’s are not only often more extensive, but are often needed over many years — even decades.
A recent survey by the Alzheimer’s Association indicates many caregivers are not getting the help and support they need — a whopping 84 percent of caregivers say they would like more support in caring for someone with Alzheimer’s, especially from family members.
“Too many people are shouldering the caregiving burden alone,” says Ruth Drew, director of information and support services at the Alzheimer’s Association. “Many people want or would welcome help, but they are reluctant or just too overwhelmed to ask.”
Tips for supporting a caregiver
Providing help and support to caregivers can be easier than most people think. Even little acts can make a big difference, Drew says. The Alzheimer’s Association offers these suggestions:
Learn: Educate yourself about Alzheimer’s disease — its symptoms, its progression and the common challenges facing caregivers. The more you know, the easier it will be to find ways to help.
Build a team: Organize family and friends who want to help with caregiving. The Alzheimer's Association Care Team Calendar is a free, personalized online tool that allows helpers to sign up for specific tasks, such as preparing meals, providing rides or running errands.
Give a break: Spend time with the person with dementia, allowing the caregiver a chance to run errands, go to their own doctor’s appointment or engage in an activity that helps them recharge. Even one hour could make a big difference in providing the caregiver some relief.
Check in: Many caregivers report feeling isolated or alone; make a phone call to check in, send a note or stop by for a visit.
Tackle the to-do list: Ask for a list of errands that need to be done. Pick up groceries or dry cleaning, or even offer to shuttle kids to and from activities.
Be specific and be flexible: Open-ended offers of support (“Call me if you need anything,” or “Let me know if I can help.”) may be well-intended, but are often dismissed. Be specific in your offer (“I’m going to the store, what do you need?”). Continue to let the caregiver know that you are there and ready to help.
Help for the holidays: Help caregivers around the holidays by offering to help with cooking, cleaning or gift shopping. If a caregiver has traditionally hosted family celebrations, offer your home instead.
Join the fight: Honor a person living with the disease and their caregiver by supporting the Alzheimer’s cause. Volunteer at your local Alzheimer’s Association office or participate in fundraising events.
“It’s a mistake to assume caregivers have everything under control,” Drew says. “Most caregivers can use and would appreciate help. No one can do everything, but each of us can do something.”
To learn more about Alzheimer’s disease and ways you can support families and people living with the disease, visit www.alz.org, the website of the Alzheimer’s Association.
(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 tensionsand 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.”
(BPT) - Kristen Beatty’s 78-year-old father, Ray, was diagnosed with Alzheimer’s about 10 years ago. Since then, he has developed a sense of paranoia, insomnia and the delusion that people are stealing from him. Though Beatty and her brother constantly reassure their father to allay his fears, the daily struggle can take its toll. Beatty’s mother, Sue, had previously cared for Ray for about five years. In 2012, Sue died unexpectedly of a heart attack, or as Beatty puts it, she died of a broken heart.
“She was exhausted from the constant care and the pressure that came with it,” Beatty said. “She was eating super healthy, walking every day and taking very good care of herself, so I truly believe it was the stress. My brother and I feel guilty because we could have supported her better, but she wouldn’t ask for help. She wouldn’t consider moving him to a facility or going to support groups.”
The stress and the pressure Beatty’s mother faced is not unlike the experiences of millions of other Alzheimer’s caregivers around the nation, who primarily care for people with the disease because of their desire to keep their family member at home, their proximity to the person with dementia or their perceived obligation — all pressures that can lead to harsh consequences for caregivers.
For example, more than one in three caregivers for people with Alzheimer’s or other dementias report their health has gotten worse due to care responsibilities, compared with one out of five caregivers for older people without dementia. And depression and anxiety are more common among dementia caregivers than among people providing care for individuals with certain other conditions.
These findings are part of the Alzheimer’s Association "2017 Alzheimer’s Disease Facts and Figures report," released recently. The report analyzes new research about cost, prevalence, incidence, caregiving, and mortality and morbidity. The report found a dramatic surge in deaths from Alzheimer’s — the only cause of death among the top 10 in America that cannot be prevented, cured or even slowed. Meanwhile, deaths from other major causes are decreasing. Between 2000 and 2014, deaths from heart disease decreased 14 percent, but deaths from Alzheimer’s increased 89 percent.
Another finding was the growing cost burden of Alzheimer’s. For the first time ever, it now costs over a quarter of a trillion dollars ($259 billion) annually to care for individuals living with Alzheimer’s and other dementias in the United States — $56 billion of which is coming right from individuals’ pockets.
According to the report, out-of-pocket costs for people affected by Alzheimer’s are startlingly high, despite support from Medicare and Medicaid. In fact, annual per-person payments for seniors with Alzheimer’s and other dementias are almost five times higher ($10,315) than those for seniors without these conditions ($2,232).
According to Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association, providing ongoing support for the estimated 5.5 million Americans living with Alzheimer’s will need to remain a national policy priority moving forward, as the population at risk for Alzheimer’s is projected to nearly double from 48 million to 88 million by 2050.
“As the number of people with Alzheimer’s continues to grow, so does the impact and cost of providing care to our health system and the millions of unpaid caregivers,” Kallmyer said. “While we’ve seen increases in federal research funding and access to critical care planning and support services, there’s still an urgent need to expand options and support for family-centered and community care and to fund more research that can bring us closer to effective treatment options and, ultimately, a cure.”
To read the full Facts and Figures report, visit www.alz.org/facts. For comprehensive information, support and resources on Alzheimer’s caregiving, visit www.alz.org/care/overview.asp.
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