A study led by Johns Hopkins and Utah State University researchers suggests that a particularly close relationship with caregivers may give people with Alzheimer's disease a marked edge over those without one in retaining mind and brain function over time. The beneficial effect of emotional intimacy that the researchers saw among participants was on par with some drugs used to treat the disease.
Charles Nichols, PhD, Assistant Professor of Pharmacology at LSU Health Sciences Center New Orleans, has been awarded a grant in the amount of $1.4 million over four years by the National Institutes of Health's National Institute of Mental Health to find and characterize novel genes involved in psychosis and schizophrenia, using novel research methods. Dr.
NPR reports that California's $26.3 billion budget deficit is marginalizing seniors who rely on California state-provided health care and service to help them manage their lives. "One endangered program is in-home support services for more than 400,000 elderly and disabled. Gov.
As life expectancy continues to increase, millions are living well into their eighties and nineties. With the aging of the baby boomers, the population of senior citizens will swell dramatically in the coming decades. These statistics will inevitably draw more attention to the aging process.
A new federal rating system to track quality gives nursing homes mixed reviews. The Centers for Medicare and Medicaid Services (CMS) developed the Nursing Home Compare Web site, which compares the nation's 15,600 homes. There were complaints that the old site was unmanageable. The Washington Post and
Health Secretary Andy Burnham set out three new models of funding adult social care in England yesterday. Publishing the Green Paper Shaping the Future of Care Together the government pledged a radical overhaul of the current charging system and welcomed debate on which model was fit for the future. The government acknowledges that people with dementia and carers are among those who pay the largest bills for care.
Welcoming the publication of the Government Green Paper, Shaping the future of care together, Dr Peter Carter, Chief Executive of the Royal College of Nursing (RCN), said the current social care system was "confusing, bewildering and unacceptable" and that today's plans provide "a historic opportunity to establish fair care under the welfare system in England.
A group of Utah State University researchers and colleagues at Johns Hopkins University, Duke University and Boston University have demonstrated that the rate of clinical progression of dementia may be slowed by a close relationship with one's caregiver.
A new law requiring the state's licensed child care centers to educate parents and caregivers about the Consumer Product Safety Commission (CPSC) has taken effect, the Cabinet for Health and Family Services (CHFS) announced. The law requires day care centers to prominently display information about the CPSC and its Web site so that parents and caregivers can stay up-to-date on the agency's information pertaining to child safety.
Fair Pay For Caregivers New York Times Further delay in rescinding a measure that denies caregivers fair pay raises the danger that their plight will get mired in the broader debate over health care costs (7/8).
Help for families with sick and disabled children in Wales is now available at the click of a mouse, Deputy Minister for Social Services Gwenda Thomas will announce. Ms Thomas will officially launch a new online scheme from the Family Fund Trust called Family Fund Extra, which gives disabled children's families discounts at leading retailers.
Deputy Minister for Social Services, Gwenda Thomas announced her plans to implement the next phase of the mandatory registration of the Social Care Workforce in Wales in the interest of public protection. Registration will become compulsory for managers of adult residential care homes by 1 July 2010 and for managers of the domiciliary care sector by 1 July 2012. The Care Council for Wales will be responsible for executing this mandatory registration.
Closing residential homes affects quality of life. Care providers must protect the elderly by ensuring those most in need have access to residential homes. That's according to Nick Bruce, owner of Nightingales Retirement Care, who has spoken out after a glut of home closures. "Around the UK there are a large number of homes being shut down and replaced by homecare services," says Bruce.
Caring for an elderly family member can be stressful and can pose health threats to caregivers. Steven Zarit, professor and head, Department of Human Development and Family Studies, Penn State, received a $3 million grant from the National Institute on Aging to study the effects of caregiving on familial caregivers. He will look at people who care for family members with dementia and how adult day care impacts the stress levels of all individuals involved.
A long-term care program could produce some needed dollars, at least in the short range, CQ Politics reports: "A new insurance program for long-term care that Democrats have included in a Senate health overhaul bill would produce about $58 billion in revenue for the government over the next 10 years, according to the Congressional Budget Office, helping to offset the cost of the legislation.
The New York Times reports on a proposal for a new health care reimbursement model that offers warranties to patients, a topic also examined in a piece by Francois de Brantes in the journal, Health Affairs.
"A federal judge on Thursday blocked a $2 hourly wage cut for California in-home care workers that was slated to begin July 1, potentially increasing California's budget deficit by another $98 million," The Sacramento Bee reports. In an oral injunction, the judge ordered the state "to continue paying up to $12.
What are the costs of caring? A new project in the School of Psychology explores nurses' experience of distress and aims to determine if empathy with patients is associated with traumatic experience in nurses. Researcher Jenny Watts said nurses can develop symptoms such as flashbacks, sleeping difficulty and emotional detachment which can have serious consequences for both their personal and professional lives.
Select Rite Aid stores nationwide will host Diabetes Solutions Days on June 23 and 25 offering patients living with diabetes valuable health screenings and self-management solutions. Caregivers and patients alike can benefit from this free chance to get professional advice on the symptoms and treatments for diabetes as well as watching hands-on demonstrations. The free events and store locations are listed online based on zip code at
In Los Angeles County, being disabled can cost a year's income. That's because the annual cost of in-home care services for seniors living alone is now $319 more than this group's median income of $17,029.
Utopia Home Care, Inc. has announced that Michelle Harris will be its 2009 Caregiver of the Year. At the company's annual corporate breakfast meeting this morning, Utopia Home Care, Inc. President and CEO Manuel F. Martinez and Executive Vice President Manuel G. Martinez presented Ms. Harris with a commemorative plaque and a check for $1,000.
Lawmakers want federal rules to cover home health care workers while Sen. Mark Warner, D-Va., plans to introduce legislation in Congress today to better educate the public on end-of-life care. The
Almost three-quarters (74%) of people providing unpaid care for a loved one who is ill, frail or disabled have reached breaking point due to the pressures of their caring role, according to new research issued to launch Carers Week 2009 (8-14 June).* The results show that the strain of caring is causing carers such extreme levels of stress and depression that they are suffering breakdowns and, in some cases, even attempting suicide.
More than one million Americans are living in nursing homes, but many would prefer to receive the services they need in their own homes, where they would be more comfortable and potentially save the health care system money in the long run. Unfortunately, many Americans who want to be cared for at home can't because of a costly institutional bias in Medicaid, which pays for nearly two-thirds of the country's nursing home residents.
The recession has increased the number of uninsured Americans and made it more difficult to access health care programs while also placing special burdens on caregivers. The Roanoke Times reports on concerns that "aid available to the newly unemployed to help lower the cost of health insurance isn't reaching everyone, leaving many without affordable access to medical care.
For more information on the impact of dementia and related mental disorders on specific ethnic groups in the United States, click on the text below
Bill Andrew identifies himself as a former “nutritionally-empowered Alzheimer’s caregiver” who attributes the slow-down in progression of Alzheimer’s disease in his wife, Carol – and the growth of his own personal emotional, mental, physical, and spiritual capability and strength to provide quality 24/7 care for her in their own home – to the targeted nutritional supplements they both took on a daily basis. Carol went to her Heavenly reward on June 9, 2008 – Bill continues on to advocate for family caregivers. Contact Bill with your caregiving questions and comments via email at ASKBill@caregivershome.com.
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Family Caregiving
Creating Memories by Routinely Avoiding the Everyday Routine
By Barbara Bernard
Routine is one of the cornerstones of caregiving. Routine supports us, soothes us, and enables us to have predictability and constancy in our often topsy-turvy lives.
For many elders, routine also becomes paramount. It is often important not to vary certain parts of the day, to maintain the routine. Morning and evening routines, as well as schedules for medical needs, provide a supportive structure that is critical for both the caregiver and the elder.
At the same time, it is essential that the caregiver encourage an environment where daily routines do not represent the entire experience. That’s so important.
When my two boys were young children, we closed out the day at bedtime by answering the question, “What was your favorite part of the day?” Often their answers included something routine, such as reading a book before bed, or a conversation we had around the dinner table. Frequently, though, they would mention something special that had occurred which I may not even have noticed.
At the end of each day, regardless of our age, we can reflect on what was memorable about today. What made this day different? What was special that I can I talk about? For the caregiver, this perspective opens vast opportunities to create. What memories can I create today?
Near the end of my father’s life, after he had pulled out his feeding tube, we scheduled a meeting at the nursing home to discuss next steps. My husband, Don, and I arrived early to spend time with Dad. Aware that he had been inside the hospital for all of his 20-day stay, we rolled him into the courtyard to feel the fresh air he loved so dearly.
In the garden, we observed some bunnies hopping about in the morning mist. Don managed to pick up one of the bunnies and placed it on Dad’s lap. Then he put Dad’s hand gently on the bunny’s back. We moved his wheelchair out from under the eave so he could feel the rain on his face while he petted the bunny. My father was a seize-the-day kind of man. That day, we had rain and a rabbit available to connect him to the outdoors.
For me this moment was about honoring my dad and his ever-present joy of living. He loved all of nature, the elements, and experiencing the moment. As I reflect back, our gesture felt exactly right, knowing that an hour and a half later, with Dad’s participation, we made the decision that it was time to take him home to die.
For many, taking care of an elder is also taking care of a patient, who may also be a family member. As I interact with families who are caregiving, I am always interested to see how they are honoring the person, not just the patient. I know that when I become an elder, I will want conversations to be with me rather than about me. I’ll definitely want to hear about something more than medicine, movements, and Metamucil.
Finding fresh ways to create memories shouldn’t be an additional chore on your list. Once you start, you’ll discover that it brightens your own day, too. When my mother was living with us, we wanted to capture all the moments we could. One morning, for example, I noticed a gorgeous sunrise with a pink backdrop silhouetting the puffy white clouds. I quickly rearranged the living room furniture so Mom and I could take in this particular vista. We silently sipped our coffee, watching the sun come into view. Mom loved moments of quiet companionship. When I see that kind of sunrise now, I call it a Norma Sunrise, after her. As you can see, it isn’t just the elder who benefits from the memories that are created. I am comforted each time I can greet a pink-backdrop-puffy-white-cloud sunrise with, “Hi Mom.”
Later, when I was providing respite care for Mae and Loyd, I discovered they LOVED cranberry sauce. If I served cranberry sauce with a meal or put on a side dish or two, Mae would exclaim, “This is just like Thanksgiving!” Because Mae had loved to cook and provide meals for her family, time at the dinner table was one of her most valued parts of the day. Often, when I tucked her into bed, she would say, “Thank you for the wonderful Thanksgiving dinner.”
Special moments in a day needn’t be major events. A single flower, a pleasant aroma, a favorite song, a flock of birds in flight, or a simple dish of sauce can suffice. Appreciating the smallest moments in the company of the elder can create lasting memories for both of you.
Tending to Mom, I resolved to live a full life to the end of my days, a life that is interesting, varied, and filled with fascinating people and rich relationships. I am hopeful that whoever will be caring for me finds ways to help me seize moments in every day and create answers to the question, “What was your favorite part of the day?”
Send your questions and comments to Barbara Bernard at ASKBarbara@caregivershome.com. Barbara is an experienced family elder-caregiver, writer and public speaker living in Eagle River, Alaska. Within a single week in 2001, both of Barbara’s parents were diagnosed with a terminal illness. Barbara and her family cared for both of them at home in the months preceding death. Her reflections from this period were the inspiration for her book, The Secret Gift: Growth in Times of Loss, first published in 2005.
Eight Tips for Caregivers
1. Obtain a comprehensive physical and mental health diagnostic evaluation for your loved one.
Not every medical facility or doctor is has the capability to perform complete diagnostic assessments for elders with memory disorders. Find an institution that specializes in the diagnosis of Alzheimer's disease and related disorders.
2. Find out all you can about Alzheimer's disease and other memory disorders to work effectively with health care and social service workers.
Many people have questions, fears and misconceptions about memory loss and dementia in the elderly. Caregivers need to constantly fight denial and stigma associated with dementing disorders. Education and understanding are essential for effective, supportive caregivers. Caregivers with greater knowledge about dementing illness and the demands of caregiving, are better able to seek and utilize professional help. Knowledgeable caregivers can learn more effective communication strategies and better approaches to managing the older people with dementia.
3. Cultivate a supportive, collaborative relationship with your elder's primary care physician.
The primary care provider (physician or nurse practitioner) plays a critical role in your elder's access to appropriate medical and social services. Your primary care providers should optimally have either special training or special interest in the care of the elderly. Healthcare providers working with the elderly requires unique If you find that you can not work effectively with your provider, be prepared to transfer your elders care to a different health care provider.
Be sure you have the names and phone numbers for your elder's medical providers, insurance information and current medications written down and easily accessible
Over the course of living with dementing disorders, many elders and their caregivers may benefit from consultation with a geriatric psychiatrist. Geriatric psychiatrists are particularly knowledgeable about the management of dementia and depression in the elderly. Geriatric psychiatrists specially trained to diagnosis and treat mental health problems older people and assist families in improving the quality of life in elders.
CLICK HERE. to find out more about the American Association of Geriatric Psychiatrists
CLICK HERE. for more about the role of the geriatric psychiatrist in the care of your elder.
For a referral to a geriatric psychiatrist in your area, CLICK HERE.
4. Find and make use of community based resources. Many communities have an extensive array of services available to elders including Alzheimer residences, adult day services, support groups, home health care, case managers and more.
CLICK HERE for SAFE RETURN. This is a national government funded program of the Alzheimer's Association that assists in the identification and safe timely return home of patients with dementia who are prone to wandering. Safe Return provides identification devices for the patient (e.g. wallets cards, jewelry and clothing labels), input to a national photo/information data base, 24 hour toll free telephone crisis line and education and training materials for families and caregivers.
5. Organize and plan for current and future financial and legal matters for the elder and his caregivers.
The elderly usually has many legal and financial matters that need to be organized. The elder should be encouraged to participate in legal and financial planning for as long as he/he is mentally clear enough to make reasonable decisions. People with dementia eventually will need assistance making important decisions about their medical care, finances and management of assets. Caregivers should consider working with an attorney (preferably one with experience in in Elder Law) and discuss numerous crucial issues including :
Power of attorney- The elder designates someone to make decisions when he is no longer competent
Power of attorney for health care The elder designates someone to make decisions about his medical care when he is no longer competent
Living will - The elder outlines his preferences about the use of an individual's decisions about artificial-life support apparatus and procedures..
Will The elder creates this document which designates the person who at the time of the elders death will manage his estate and distribute his assets to the beneficiaries.
Guardianship/conservator ship The elder identifies a particularperson to gain legal control over the elders business and financial matters.
CLICK HERE for AARP's site "Legal Solutions" for referrals to attorneys, self help guides, legal glossary and more useful information.
CLICK HERE for a referral to a member of the National Association of Elder Law Attorneys
6. Cultivate a network of family ( including children and teenager), friends and other caregivers to help out.
You're not in this alone! Don't be afraid to ask family, church members and friends to relieve you from caregiving at least a few hours per week. Many people decide to use community resources such as: respite care, adult day care, home health, meals programs, homemaker services, mental health services. Consider attending Alzheimer support groups where you can network with other caregivers, share your experience with people who coping situations similar to yours. Work with your network of helpers to develop strategies to family and healthcare providers; and assist with making decisions about the care of your loved one.
In addition to getting part time help from family and friends, consider a formal respite from either an Adult Day Health Program or time limited 24 hour care from a nursing home. Regularly set aside time to calm your mind and body through prayer, meditation, exercise or counseling.
Look at "The Caregiver Maintenance Checklist" in The Complete Bedside Companion by Roger McFarlane.
8. Make your own physical and mental health a top priority! The only way you can be a good caregiver is to be physically and mental in tip top condition. Be sure that you are getting adequate amounts of sleep, exercise and nutrition. Try to pace your self and reduce stress or conflict in your life. Be sensitive to signs that you are getting depressed and "burned out". Consider mental health treatment if depression, anxiety or sleep problems persist. See your doctor regularly and take care of your own health. Always set aside time for people and activities that help you laugh, relax and enjoy life.
CLICK HEREfor ways to recognize and reduce caregiver stress
you might also be interested in these articles . . .
I learned many lessons as the long-time caregiver for my wife, Carol, who dies this past summer after a 14-year battle with Alzheimer’s disease. Most of the lessons were learned the hard way, as no one told me what to expect and how to proceed with the myriad caregiving responsibilities that came my way.
As Carol's family caregiver, I was also her healthcare advocate since, as the disease progressed, she could no longer function on her own. I found that, while I could handle many of the daily caregiving activities without a problem, becoming her healthcare advocate was probably as challenging as anything that I had previously done. I often found myself frustrated and challenged while trying to:
Find out everything I could about Alzheimer's disease and related dementias
Find doctors and other clinicians who understood the nuances of Alzheimer's and related dementias
Search for and obtain a diagnosis for Carol (there are at least 150 various dementias of which Alzheimer's is the most prevalent)
I also found difficulties in:
Getting answers and complete information from her family doctor. Fortunately, the neurologist and psychologist helped "fill in the blanks"
Filtering through the many misunderstandings and complications that I ran into as I talked with various doctors and other sources
Being heard and understood by other members of her healthcare team
Finding and obtaining access to community-based and home-based support services
Making sense of multiple sources of information, which was often contradictory.
A MetLife Mature Market Institute report provided a number of suggestions for becoming a healthcare advocate for loved ones who have a chronic illness or a disability. I have adapted my own personal caregiver experiences into those suggestions, and I share them here:
Form a healthcare team.This would include doctors, nurses, social workers, and any other healthcare professional involved in your loved one's care. I would also include family and friends who support your caregiving role.
Identify the prime point of contact on the healthcare team. While this could be any one of the above, I would choose the person most knowledgeable about the chronic illness or disability, about the healthcare system, and the inner workings of the healthcare team itself. In my case, I chose Carol's neurologist upon whom I was most dependent for information and about the "next step."
Assert yourself as a crucial part of the healthcare team. In fact, I assumed the key position and found myself coordinating much of what was done for Carol. However, not everyone would be able to do this. Regardless, you should communicate openly and regularly with the healthcare team so that it is aware of any changes in your loved one's status. Before any doctor appointments or any meetings with other members of the healthcare team, write down a list of pertinent questions noting the most important questions to ask first. Stay calm and positive during your communication sessions -- even when you feel frustrated -- yet persistent if your questions are not being answered.
If at all possible, include your loved one in the decision making. While this may not be possible in some situations -- for example, if your loved one is in the late stages of Alzheimer's disease, as my wife was -- you should make every effort to include them. Keep in mind that decision-making ability often varies from person to person. Your loved one may not be able to make financial decisions any longer but may still be able to able to articulate their healthcare preferences.
Write everything down.Keep a record of key contacts, doctor and other appointments, healthcare information, and the outcomes of each and every appointment in a log book. This would include the plan of care for your loved one which should be broken down into goals and specific tasks that you can manage yourself.
Becoming a healthcare advocate for your loved one takes time. It doesn't happen overnight; I can vouch for that. But these tips, including my own personal experiences, may help you feel more confident and organized while working with your loved one's healthcare team.It is also a good idea to ask for input and advice from other caregivers; for example, through a support group of caregiving peers who "have been there and done that." I also personally suggest forming your own personal support team (more on that in a future column).
I am sure that many readers of this column will benefit from the above suggestions. If so, I would appreciate hearing from you.
Please e-mail me at ASKBill@caregivershome.com with your comments and/or reactions. I will include them in a future column, with your permission. Please provide your full name and address. In the column, I will only use your first name and the initial of your last name as well as your city and state. Thank you.
WORDS TO CARE BY . . .
"Be silent as to services that you have rendered --
but speak of favors that you have received."
Seneca (5BC-65AD)
Resources
Click on any of the categories or links below to find additional information on other organizations' web sites. Please feel free to contact the LACRC at (800) 540-4442 for more information.
For a complete listing of Caregiver Resource Centers throughout California, please visit: http://www.californiacrc.org
Alzheimer's Disease for Families
Alzheimer's Disease for Professionals
Behavior Management for Families
Caring for Aging Parents
Homecare
Huntington's Disease (HD)
Nursing Homes
Traumatic Brain Inury (TBI)
TBI for Professionals
Sexuality, Intimacy and Brain Impairment
