Mental decline may start years before Alzheimer’s Disease (AD) is diagnosed. Rapid cognitive decline 5-6 years before AD becomes evident is not seen in people who do not develop the disease.
Posts Tagged ‘caregiver’
The Shriver Report: A Women’s Nation Take on Alzheimer’s was just released. The Report is a collaboration between Maria Shriver and the Alzheimer’s Association, exposing the epidemic’s effect on women as caregivers, advocates and people with the disease. Maria is getting people talking about Alzhiemer’s disease!
Alzheimer’s is a women’s issue. According to the report, women make up two-thirds of the people with Alzheimer’s in the U.S. and account for 60 percent of the unpaid caregivers for people with Alzheimer’s. This means that 10 million women either have Alzheimer’s or are caring for someone with Alzheimer’s. 40 percent of the caregivers interviewed said they felt like they had no choice in assuming the caregiving role. These numbers continue to grow, daily.
Alzheimer’s disease is costly. Governments, businesses and families spend $300 billion a year on Alzheimer’s disease. Yearly, it costs about $56,000 to care for someone with Alzheimer’s, which is typically paid for by families. Daughters, sons, spouses will give up their jobs, savings, time, health, and sanity to help care for loved ones with Alzheimer’s.
A woman with Alzheimer’s has unique challenges. Since women tend to live longer, they are more often widows who may not have a spouse to care for them as the disease progresses. She may be caring for other family or friends, so as she declines the others will need to find different caregivers. Women tend to be the “glue” in the family, and as her disease progresses her family may no longer remain as cohesive.
A woman as a caregiver for someone with Alzheimer’s experiences challenges as well. She is more likely to be depressed, and according the Report, 68 percent of women who were caregivers experienced emotional stress, and 51 percent of them said they suffered from physical stress. Most caregivers don’t self-identify as caregivers. They just think a loved one needs help and they are going to help. They don’t know they need to ask for help, and don’t realize what a toll caregiving is taking on their lives and health. Caregivers often put aside their own needs and dreams to take care of their loved ones. Daughters experience a role reversal, now needing to take an in-charge position with their parents.
The Shriver reports asks some questions, and I have the following answers:
How can we relieve the emotional stress on families? Caregivers need support, education and resources. The needed resources are often available, but it’s very difficult to find them when you need them. Lack of information promotes fear. That is why I launched www.AgingPro.com. It brings all the resources, professionals, education and support for eldercare to one place. Care coordination is also crucial, and part of the Healthcare reform legislation. Certified Geriatric Care Managers provide an invaluable communication link between doctors, community care providers, persons with Alzheimer’s and their family. Care Managers are invaluable, yet for some are not affordable. Pilot community care coordination programs do exist, and we need more. We need more support groups, both in-person and online. Adult day respite programs need to focus on early and moderate stage memory loss, not just later stages.
How can we prepare for Alzheimer’s possibly hitting our own family? Few want to talk about it. Some don’t even want to say the word. Yet it’s a natural part of life and will affect all of us in one way or another. I’m referring to Aging. Aging has become a taboo subject in our American culture, something we pretend isn’t there. If you read the paper, watch TV, or go on the Web, you mostly see images of youth, thinness, wealth and beauty. However, we are beginning to realize our population is aging – and so are we.
I’m here to tell you that getting older can be a positive experience and have its own unique rewards. Contrary to the whispered implications, it doesn’t have to be a time of withering away and going to a nursing home. Fun, happiness, success and fulfillment aren’t just the things of youth; they can be enjoyed abundantly throughout life. Older adults can stay independent, active and vital as they age. Getting older CAN mean getting better, if you have the right attitude, information and resources.
So first, we need to be willing to have discussions about aging, starting in our families and communities. Ask each other – when you get older, where do you want to live? What is your ideal vision? It is very helpful to create a “Plan B.” Just as we would prepare for an earthquake, we prepare for the potential of Alzheimer’s in the family. Plan A is what you’d like to happen, Plan B is what you will do if Alzheimer’s strikes you or your family. Plan B is created by: educating yourselves about the signs and symptoms of the disease; pre-planning your legal matters (creating a will, trust and durable power of attorney for healthcare and finances); saving money for your long-term-care, or purchasing long-term-care insurance; educating yourselves about the choices of housing and care; and locating the professionals and resources available to help out along the journey.
How can government, business, nonprofits and the press effectively call attention to the threat of Alzheimer’s and implement solutions? More education and awareness campaigns can be created – public service announcements, television series on different eldercare topics (similar to the new “Hoarders” series), celebrity involvement – to help shift the old negative stereotypes of aging and eldercare, and to help the millions of caregivers that don’t know how to access the services or find the support they need. Maria Shriver, the aging field needs your voice!
An example of a creative television show might be Extreme Makeover, Grandma Edition. Make over the home of an older person – repairing and/or modifying their homes so they can continue to live independently. There are many inspiring stories of need and courage among caregivers and elders!
Businesses can provide eldercare services, counseling and care coordination as part of their Employee Assistance Programs (EAP). Non-profits can provide more grant money to elder care topics. Solutions to Alzheimer’s now include: information, support and best practice guidelines.
The topic of Women and Alzheimer’s is so important. It is where the pain points of love, guilt, money and time intersect – a perfect fit for government, the press and business to join in the cause.
The issues of women, Alzheimer’s and eldercare are many-faceted and deeply layered. More money for Alzheimer’s research is needed. More support and education are also needed on all eldercare topics. Most family caregivers for the elderly are trying to do what’s best for their loved ones. They don’t know where to turn to get help. The stress of caregiving affects their work, finances, and physical and mental health. Caregivers need a place to connect, to learn, be inspired and empowered. AgingPro.com is that place, the “Waiting for Superwoman, Caregiver Edition.”
Dr. Cheryl is nominee for Alzheimer’s Association “Visionary Women and Compassionate Caregiver” awardMonday, September 27th, 2010
On Friday, September 24 I was honored to attend the celebratory luncheon for the 2010 Alzheimer’s Association (Orange County) “Visionary Women and Compassionate Caregiver” award. I was lucky enough to be nominated this year. The luncheon honors individuals who have served as models of commitment to compassionate care.
I felt so blessed to be there, with (mostly) women who are involved at some level with caring for those with Alzheimer’s. Each person I spoke with had their personal story of how this disease has affected them in some way. Some caregivers were children or spouses, some were professionals in the field. Some of their loved ones have already passed away, others are still living with the disease.
Alzheimer’s was the common thread at this luncheon. We all knew the storyline, quite personal yet familiar. We all knew that we could never really explain to another how this disease impacted us, nor could we convey all the stories we hold in our hearts – the struggles, the blessings, the comical events, the tears and the laughter. The stories may slowly emerge for us, yet all the details will truly only be our own. We simply honor each other, in a knowing of what this disease can bring forward, and in a gratitude that we have each other to lean on, to learn from and to celebrate with.
Blessings to all the caregivers out there.
I’d love to hear your stories, if you care to share.
What is Caregiving?
Nobody applies for this job. Most try to deny the possibility they might be called upon to help, or that their loved one might be anything less than independent. Sooner or later, though, something occurs, and it will be looming in front of you.
The term “caregiver” refers to anyone who provides assistance to someone else who needs help. Specifically, we are generally referring to “informal” caregivers – those unpaid individuals providing assistance to someone who is chronically ill or disabled and who can no longer care effectively for himself or herself. This form of care delays or even helps avoid institutional placement or the need for more “formal” or paid caregiving services. Caregivers can be spouses, partners, adult children, relatives or friends. Together, they provide services valued at more than $257 billion a year. Family, or informal caregiving, is the backbone of the long-term care system in the United States.
Many caregivers do not identify themselves as such. When someone does the work of a caregiver but doesn’t think they are, their stress levels are often higher than if they claim their responsibilities.
Caregiving is not easy. Make no mistake about it: caregiving can become a full time job that requires specialized knowledge and critical skills. Fortunately, many of these skills can be either learned by non-professionals or gained by engaging experienced skilled professionals in the field.
Caregivers may be called on to help with areas such as:
• Grocery shopping
• Paying bills
• House cleaning
• Providing or arranging for transportation
• Attending doctors visits
• Giving medication
Brightly colored tableware may be the key to getting Alzheimer’s patients to eat and drink more.
Significant weight loss can be seen in about 40% of people with severe Alzheimer’s disease. This has most often been attributed to depression and eating difficulties, but a study that was conducted in 2004 and is published in the journal Clinical Nutrition, has indicated that vision problems might be the cause.
Serving meals on brightly colored tableware may encourage greater food consumption among patients suffering from Alzheimer’s. This study showed that people with Alzheimer’s disease experienced a 24% increase in food intake and 84% increase in liquid intake when served on bright red or brightly colored blue tableware and cutlery as compared to white tableware and stainless-steel silverware.
If you are having trouble getting your Alzheimer’s patient to eat, consider using high-contrast tableware. This is an easy and inexpensive solution, which helps maintain the patient’s diet and promotes independence.
Bright ideas brought to you by Emily
We had an historic inauguration of our 44th president last week. He asked for each of us to look at where we might be able to change in order to help our country. Caregivers are serving already, making a significant difference to our country by keeping the long term care costs lower.
As caregivers, here are some questions to reflect upon if you are called to…
1. How can I take even better loving care of myself?
2. How can I serve my community or my family?
3. What can I give back?
4. Are there ways that I can take better care of the environment?
5. Are there ways I can better live within my financial means?
6. Is there an area in my life where I might better choose peace?
Have you recently found yourself thinking about the upcoming holidays with a sense of dread? Perhaps you see yourself sitting at the table surrounded by your family, the smells of turkey and pumpkin pie wafting in from the kitchen, but you are overcome with a sense of sadness or disappointment. Now that things may be different with your parents, it’s a good time to ask yourself, what do I really want my holidays to look and feel like? Traditions are funny things. They can be comforting and depressing all at the same time. But you have the power to create the experience you truly want.
You might ask yourself these questions about what you really want this holiday season:
1. Do I like my family traditions just as they are, or am I participating to make someone else happy or comfortable?
2. Where do I want to be?
3. Who do I want to be with?
4. What experience am I looking for?
5. Is there a new tradition I want to start this year?
6. How can I get the experience I most desire?
Once you are clear about your ideal vision for your holidays, find a way to communicate that to the people closest to you. Families do not always embrace change right away, so be prepared for some resistance. If you are patient and allow your family to process the idea of making changes in a gradual way, you may be surprised by how many will eventually welcome the new traditions and thank you for leading the way to happier holidays for everyone!