Social workers understand that family caregivers play an important role in supporting older adults. They also understand that family caregivers do not always get the recognition they deserve or the support they need.
Social workers meet and help family caregivers in many places:
Health care settings such as hospitals, clinics, and nursing homes
Social service agencies for families and older adults
Mental health settings
Employee assistance and eldercare programs
Agencies serving veterans and active military
Housing programs and faith-based organizations
Professional social workers have a bachelor's or master's degree in social work and complete many hours of supervised fieldwork as part of their education. Social workers follow a Code of Ethics and know how to work well with people of all cultures. Many social workers have years of experience working with family caregivers of older adults. Social workers provide many important services to family caregivers:
Educating caregivers about aging, health, and mental health
Counseling to help families cope with the stresses of caregiving
Coordinating care and services
Linking caregivers with the resources they need
Helping families plan for the future
Leading support groups for family caregivers
Working through conflicts and managing crises
Advocating to help families reach their goals
Communicating with other service providers and organizations
Helping families find their way through transitions
Social workers help family caregivers take care of themselves.
Click here to read the NASW Standards for Family Caregivers of Older Adults.
Click here to find a social worker in your community with expertise in aging or other areas.
Click here to learn more about caregiving and aging.
Click here to find out how you can get involved in National Family Caregivers Month.
Click here to learn about the Year of the Caregiver and the Administration on Aging.
Your heart, like all other muscles and tissues in your body, has to be supplied with a continuous flow of blood, oxygen, and nutrients to stay alive. To accomplish this, your heart pumps blood to itself first—before sending it to any other part of your body—regardless of what's going on anywhere else. It nourishes itself through your coronary arteries, which branch off from your aorta immediately after it leaves your left ventricle. With every beat, your coronary arteries redirect blood back into your heart, wrapping themselves all around its surface like the branches of a tree and penetrating deep into your heart's muscle tissue to reach every cell.
By design, your heart is literally its own first priority. It has been since its very first beat and it will continue to be until its last. The paradox of caring for another is that you have to care for yourself first.
The Shadow Side of Caring
The metaphor of the heart gets at the crux of the issues of caregiver burden and burnout. Depending on the extent to which you affirm and care for your own needs, caregiving can be a blessed experience or an ordeal. It can bring personal satisfaction and deepening intimacy, or depletion and erosion of intimacy.
Being the partner of someone with illness can bring challenges for which you might not be fully prepared—challenges to your knowledge about how to care, to your time and energy available for providing it, and to your emotional resiliency if your loved one's illness is long-term. Recent years have seen a great deal of attention paid to the health and adjustment of caregivers. The most extreme challenges are for people living with a partner with Alzheimer's disease, advanced cancers, or other conditions demanding intensive daily attention or vigilance over an extended time. But there are many more conditions that may appear to be less obviously demanding, such as fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, multiple sclerosis, or others, which nevertheless can impact you in major ways.
Without adequate self-care, preparation, or support, the burden of adjustment for care partners can be considerable. One of the surprising findings of research is that their own distress may actually equal or even exceed that of the patient. How can this be explained? Consider that one of the greatest sources of stress any person can experience is a lack of control—a sense of helplessness—in a difficult situation. Ironically, a seriously ill person may at least derive a sense of control from having concrete and practical steps to take, such as taking daily medication, having surgery, or other forms of medical intervention. All of this helps to channel one's efforts to get better and alleviate a sense of helplessness. The partner, on the other hand, may lack a comparable sense of concrete and practical steps into which to channel his or her energy. Partners who feel that they can only passively witness their loved one's suffering, and that there's nothing they can do to help reduce it or contribute to their loved one's healing, are at the greatest risk of emotional distress.
Studies have found that partner distress manifests as mood disturbance (depression, tension), poorer health, and even lower immune function. A particularly revealing recent study at the University of Florida looked at the long-term health of the partners of cancer survivors who had received stem-cell transplants. The procedure is quite traumatic for patients, and the recovery period is extended. Dr. Michelle Bishop and her team evaluated 177 couples an average of six and a half years after the procedure and compared them to 133 normal couples ("controls").
As you might expect, partners and survivors alike had more depressive symptoms, sleep problems, and sexual problems than the normal couples. Beyond that, however, the partners also had more fatigue and cognitive problems than the controls, and their odds of depression were nearly three and a half times higher Further, partners who were depressed were less likely than depressed survivors to receive mental health treatment, They also had less social support and lower ratings of marital satisfaction, less spiritual well-being, and more loneliness than either the survivors or the control couples. The researchers concluded that partners of stem-cell transplant patients experience similar emotional distress and greater long-term social costs than do the survivors themselves.
The point I want to emphasize here is to urge you to recognize the genuine vulnerabilities of being a caregiver and to honestly take stock of your true needs for support and self-care. As we will see below, attending to your own adjustment and well-being is a real and necessary contribution to the quality of your relationship as well as your loved one's healing.
How Your Well-Being Matters
What are the consequences of your own well-being for your partner? This is a very important question to consider, and the answer just might give you further incentive to seriously attend to your own needs.
Studies have demonstrated that there is a feedback loop between the two of you: caregiver distress can contribute to distress in the patient, which, in turn, may have adverse effects on the patient's well-being, adding further to the caregiver's stress. This has shown up in the work of Professor Laurel Northouse, PhD, RN, at the University of Michigan School of Nursing, She has found partners' emotional adjustment to be a significant predictor of how well women with breast disease adjust to their own condition. In her research, women whose partners were coping better coped better themselves, while women whose partners were having a harder time showed signs of poorer adjustment to their disease. She also found that each person's level of distress seemed to predict the other's.
Aside from the partner's impact on the patient's psychological adjustment, another theme in the research is that in life-threatening illnesses, partner adjustment may influence the patient's actual survival. For example, when University of Arizona researchers looked at what impact the care partner's sense of confidence and self-efficacy might have on his or her spouse's surviving congestive heart failure, they found that it trumped that of the patient. In other words, while confidence in both spouses contributed to survival, the partner's confidence actually had stronger impact. Patients lived longer if their partner had a stronger sense of self-efficacy.
How could partner self-efficacy translate into better survival for the patient? In their analysis of these findings, the researchers surmised that partner self-efficacy was a signal of marital quality. In the introduction, I discussed the idea of intimate relationship in general having a "protective" effect that translates into better odds of patient survival. Indeed, such an effect is one of the great assets of a relationship, but now it appears to be modulated to some extent by the quality of the relationship. Since you and your partner are part of one system, if either of you runs into difficulties adjusting to the realities of the illness, those difficulties may affect the other as well as the overall quality of your relationship.
One of the ways that adjustment difficulties weaken marital quality is through conflict, and a large study has affirmed a connection between marital conflict and patient well-being. The Quebec Health Survey studied 7,547 couples living with one or more chronic health problems Patients who reported they had conflict with their partner had a more negative perception of their own mental health and reported higher psychological distress. This would seem to reinforce the idea of a loop between adjustment in either partner and patient distress, and as we know greater patient distress contributes to poorer medical outcomes.
Thus, beyond the general protective effects of being in a relationship, there is a continuum of relationship quality along which you as a couple can find yourselves, and where you are on this may even influence survival in life-threatening conditions. This principle was affirmed in a second study by the same team at the University of Arizona who conducted the earlier study on congestive heart failure. When they followed 189 couples for eight years, marital quality proved to be a significant predictor of patient mortality—to a larger extent than even individual patient factors such as psychological distress, hostility, neuroticism, self-efficacy,optimism, and emotional support.
My point in highlighting these studies is that as a care partner, your self-care clearly has consequences that extend beyond your own inner sense of well-being. Self-care is your path to resiliency, self-efficacy, and emotional well-being, all of which will affect your partner and the quality of the relationship between you.
When the hustle and bustle of the holidays is fast approaching, it is important to remember our loved ones who are in area nursing homes. This can be a depressing time for them. They are separated from the normal routine and for many of them this may be their first time away from home during the holidays. Family members should realize the importance of reaching out to their family and friends living in nursing homes and try to make their loved ones holidays as "merry and bright" as possible.
Too often residents feel forgotten and unimportant during this time of the year. While everyone is out shopping and making cookies and wrapping presents, our older adults may be sitting and waiting for a friendly visit and/orto be included in the holiday festivities in some way. Investing in yourloved one can be key to a happier holiday for both youand your loved one.
Visiting Often
One of the ways you can keep your loved one involved in the holiday spirit is to visit them often. Visits from family and friends are always welcome and especially dear around the holidays when they may be feeling a little neglected. The time you spend with your loved one can be a positive experience for both of you. It can help their day go a little faster, and of course seem a little more special because of a visit from a family member or friend.
Taking a loved one home, if it is at all possible while youare preparing for the holiday festivities, will make them feel they are still a part of the celebration. If yourloved one is physically able to leave the facility to share in your holiday experience , it can make the holiday all the more special for them and you. Residents are very grateful to have the opportunity to be with loved ones during the holidays and they are appreciative of the time youare willing to spend with them. Also, another plus is that once you have them home their enthusiasm is contagious!
Andwhile we are on the subject of visits, visits are GREAT! Nursing home residents love visits. Many treasure visits with children and grandchildren the most. Children, while adequately chaperoned, can be a real source of enjoyment and pleasure for an older adult. And don't rule out visits from pets as well. Many of our nursing home residents love to have visits from pets. Check with your nursing home to see if there is anyone available for pet therapy. Quite a few nursing homes have people who are willing to bring in their pets who have been certified to do friendly pet visits. If this is the case in your loved one's nursing home, see if there is a list that your loved one can put their name on requesting a friendly visit from the visiting pet the next time they come into the facility.
Spirituality and the Holidays
Getting your loved one in touch with their spirituality during the holidays can be especially helpful as well. The holidays are a time when many older adults reminisce of days gone by. While this is usually a pleasant experience, it can be a little sad because of the many losses we experience by the time we are older adults. A resident's spirituality can be a comfort and a source of strength for them during the holiday season. Gettingyourloved one in touch with a counselor or person from the clergy can be helpful in addressing the loneliness and spiritual concerns that theymay have in theirlives. Most nursing homes are good at havingan area priest or pastor available to visit with residents. Speaking with the nursing home social worker or administrator and setting up a visit for your loved one can be a source of personal strength and encouragement for themduring the holidays.
The Importance of Involvement
If at all possible, try to get yourloved one involved in a project that allows them to reach out to someone else. Most residents love to be productive and involved in other people's lives. You never lose the urge to make a difference to someone less fortunate than yourself.
There are all types of projects that older adults can getinvolved in. Making holiday cards is one activity that does not require a lot of energy and can be done at a resident's leisure, when they are feeling up to it. Depending on how involved the resident wants to be, they can either make cards for their friends and family or they can make cards for other people in the community who could use a friendly reminder that they are being thought of.
Another project that is special to my heart is the "Holiday Diary". This can be done with the assistance of a family member or friend if need be, but the idea is to getthe resident to document a holiday remembrance so that it can be saved as a keepsake for the family record. It can be called the "Twelve Days of Christmas". For this project, the loved one recalls a special holiday moment, a story, a gift received and/orgiven or special holiday song that meant so much to them and maybe still does for each of the TwelveDays of Christmas. This is a greatway to find out about holiday traditions and special times that happened long ago. Keeping a written journal of these special moments can be a treasure in years to come.
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Bio:
Bonnie Camp is a senior at Richard Stockton College in NJ and plan to graduate with a Bachelor’s in Social Work, a minor in gerontology and a minor in writing in May 2010. She is a trained volunteer with the New Jersey Office of the Ombudsman for the Institutionalized Elderly and a hospice volunteer. Ms. Camp is also the unit chair for NASW Cape May-Atlantic-Cumberland unit.
Most cancer treatment involves regular visits to an oncology office or hospital for intravenous, or IV, chemotherapy. But cancer treatment is changing and more and more, cancer treatment involves taking pills. Oral chemotherapy – taking pills to treat cancer – offers many benefits: fewer office visits; less time away from work and family and less interference with personal schedules. Patients welcome the absence of painful needle sticks that IV chemotherapy requires. But the advantages of oral chemotherapy are balanced – if not outweighed by – the responsibility for self-treatment of a serious disease.
Treating Cancer with Pills
When a person receives IV chemotherapy, the oncologist knows exactly how much medicine a person receives because the treatment is closely supervised by medical and nursing staff. But when treatment is done at home, the responsibility for adherence – ensuring that cancer medication is taken as prescribed – falls on individuals with cancer and their caregivers.
What Is Adherence?
Adherence means taking medications safely, timely, faithfully and accurately. It also means that:
No doses are skipped
No extra doses are taken
No doses are taken in the wrong quantity, at the wrong time, or under the wrong conditions (e.g., with or without food)
Adherence is very important in cancer treatment. However, many adults have a poor track record with adherence. Recent research shows that more than 50 percent of Americans do not take prescription medicine as instructed. The numbers are even worse with cancer drugs – it's estimated that only 30 percent of people with cancer take their medication as prescribed. Non-adherence (not using medication as prescribed) is associated with more doctor visits, more hospital admissions, and longer hospital stays – all of which contribute to rising health care costs. The estimated cost to the U.S health care system of non-adherence to prescription medications is $100 billion – and rising.
Why Is Adherence to Cancer Medication So Important?
With any medication, non-adherence can have a serious impact on a person's health. But the stakes are often higher in cancer treatment. Not taking cancer medication as prescribed may mean that that drug won't work, since a certain amount of medication (referred to as a "therapeutic level") needs to be in the body in order for the drug to be effective. In many cases, cancer may return if a person takes the cancer medication occasionally, or stops taking it altogether. Non-adherence can also affect how the doctor views the patient's illness, and may result in unexpected changes to a patient's treatment.
The Challenge of Adherence
As simple as it sounds, adherence can be challenging. Many people have difficulty fitting medication-taking into a busy lifestyle, which may include work, family, and other obligations. Some people fear that cancer treatment will take away enjoyment and pleasure in life; others may feel burnout or "treatment fatigue" from long-term use of cancer medication.
Ways to Incorporate Medication-Taking Into a Busy Life
Use weekly pill containers – These inexpensive tools allow you to organize your medications into daily doses, and are especially helpful if you are taking multiple medications or planning to travel.
Explore electronic adherence tools – such as cell phone text reminders.
Identify pill-taking cues – Consider taking your medication when you do other regular activities, such watching certain TV shows or brushing your teeth.
Develop an action plan for unexpected and special events - such as weekends, vacations and celebrations.
Ask your loved ones for help– Adherence is always easier when you have support from others.
Keep in mind – medication adherence is
difficult and everyone makes mistakes
at times.
Understand how your cancer drug interacts with food and other medications you are taking – A pharmacist is an excellent resource if you have questions about food and medication interactions.
Maintain regular phone or face-to-face contact with your health care provider. Cancer medication instructions are often complex. Talk to your health care provider if you have any questions about your treatment. And remember to report side effects, as these can also affect adherence to your medication.
Special Considerations for Older Adults with Cancer
Older adults face special challenges in maintaining good adherence. Having more than one illness at the same time (often referred to as "co-morbidity") is one such challenge. For older adults, having multiple conditions (such as cancer and heart disease or diabetes) increases the number of prescription medications, which makes adherence more difficult. Older adults are also at increased risk for dementia or other cognitive problems, and may forget to take their medications or become confused about medication instructions. They may also have arthritis or other functional difficulties, which may make it challenging to open pill bottles.
Adherence decreases as the number of
daily medications increase.
Ways to Improve Cancer Medication Adherence With Older Adults
Make sure to have clear instructions for all cancer drugs. A doctor or nurse should review the instructions in the office and also provide written instructions to take home. Be sure to ask questions if anything is unclear or confusing.
Caregivers and loved ones should fully understand the medication instructions. Cancer medication instructions are often complicated, so it's helpful for caregivers and family members to understand the instructions as well, even if the person with cancer can take the medication without assistance.
Have an updated, written list of medications in hand, when talking with health care professionals and caregivers.
Ask the pharmacy to provide easy-to-open medication caps, pre-loaded medication dispensers and large print medication labels.
Use a pharmacy that provides home delivery of medications, such as specialty pharmacies that ship overnight.
Resources
The National Transitions of Care Coalition (NTOCC) has some helpful tools to help you organize your medications. NTOCC has created My Medicine List for persons who take multiple medications or visit the doctor often, to help manage their medications and medical appointments. Visit www.ntocc.org/Portals/0/My_Medicine_List.pdf for more information.
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Bio:
Stacy Collins, MSW, is a Senior Practice Associate at NASW, specializing in adult and pediatric health care issues. Ms. Collins has over 20 years of experience in health care advocacy, education, and direct service with national and community-based organizations. As one of the NASW staff covering oncology, Ms. Collins developed a web education course for social workers on promoting adherence in oral chemotherapy, in conjunction with the National Coalition for Cancer Survivorship. Prior to joining the NASW staff, she was the project director for a federally –funded initiative to develop community engagement strategies for large-scale cancer clinical trials. Ms. Collins holds an MSW from the Catholic University of America and a BA from the University of Virginia.
Caregivers are often labeled as victims or sufferers when caring for a loved one. Caregiver are expected to always provide excellent care, to never ask for assistance, and to be a martyr regardless of emotions they are experiencing. High standards seem designed to create guilt, shame, and possibly a sense of failure if a caregiver does not appear to meet the expected criteria. Unfortunately, we often believe that caregivers should conform to a cookie cutter role. This one size fits all view of caregivers ignores the individuality of caregivers, the individuality of those cared for, and how a caregiver's role changes as a loved ones' care needs change.
Role Changes
A caregiver's role can change in the moment or by day, as each day may be different. If, for example, the person being cared for suddenly needs community resources arises, then his caregiver’s role will change. Generational differences may also contribute to the response of the caregiver during times of significant change.
It’is helpful to think of a caregiver’s role changes in the context of changing job titles. Roles can include, but are not limited to:
advocate
banker/financial planner
chef
shopper
taxi
While this is not a comprehensive list, it helps to identify why job descriptions note "Other duties as assigned."
A caregiver adapts to role changes. For example, a gentleman caregiver who has never cooked, cleaned, or food shopped adapts to an unfamiliar role. Female caregivers may become financial managers when they may never have managed funds before. Role reversal is a common term used when a child becomes the parent. Reversals can be a challenge as the caregiver tries to meet their parents' needs and because the elderly parent may resent needing help. A son may hire a home care aid to care for his mother and his mother may fire the aid or refuse to let the aid in her home. Or a loved one may independently make needed changes without being asked to do so. An example of this is a person with dementia choosing to give up driving.
Changes in Levels of Care
The most pressing concerns for many of us who have a loved one who needs help are the "what if" questions. "What if mom falls in the middle of the night?" "What if dad needs more care then I can give him?" The "what ifs" begin as a loved one's physical or personal safety changes. During the "what ifs" stage services can include:
home delivered meals
companion services
home healthcare
adult daycare
senior apartments
assisted living
nursing home
hospice
One or several in-home services can be used at the same time. Caregivers are not selfish when seeking services to meet the needs of their loved one and of themselves. Often caregivers neglect themselves while providing care. A caregiver can immediately say when their loved one last had medical care, but when asked the last time they had medical care, specialist care, or a dental appointment – often a long pause and a response of not remembering.
Professionals emphasize the need for self-care and mantras like "Before I can take care of others, I must take care of myself." Often a caregivers' worst fear is having something happen to him or herself so that they can’t care for their loved one. Taking care of oneself first assists with taking care of a loved one.
When considering the need of in-home care or services outside the home the emotional impact must be considered. It is difficult to ask for help. At some defining moment, in home assistance is needed. That moment differs for each of us. In cases of persons diagnosed with Alzheimer 's disease it may be when a loved one wanders or has behaviors. For a person with Multiple Sclerosis, physical changes in the body may require the need for homecare services such as bathing and dressing. A caregiver may develop his or her own health problem.
Caregivers have difficulty talking about assistance due to perceptions of being able to balance it all. Caregivers may experience a need to justify choices to family members, friends, and coworkers. The choices may bring forth feelings of denial, guilt, and even anger, in both the caregiver and those around them. Second guessing decisions are natural as there will be emotional ups and downs regarding if the right decision was made. Remember, caregivers are making decisions based on caring for themselves, the loved one, and what is best for both.
Grief or loss is often experienced as the need for assistance with care requires the need for in-home care. The loss of autonomy is experienced by both the caregiver and those cared for. Feelings of anger at self, the person needing care, and the illness/disease are part of the grief process. While the feelings are a normal reaction, caregivers may feel ashamed about negative thoughts or feelings towards the person in need of care.
A sense of violation to self, loved one, privacy and home is expected as services are provided in the home. These are emotions caregivers feel at some point during care. The frequency, intensity, duration, and type of emotion, although individualized, is not uncommon.
Services not mentioned previously can include in or out-of home respite. Respite can be used for caregivers to have time at home, recuperate from an illness, or attend special events. Costs vary by region and by payor source. Please contact local agencies to obtain respite information.
Financial Aspects
The services outlined in this article can vary in cost from private pay to Medicaid. Rates are based on the services needed. Private pay is straightforward as services are paid for out-of-pocket. Grants, although extremely rare, can be sought for a one-time service. Medicaid can also be used for services if eligibility requirements are met. Medicaid criteria vary by state, by type, and by for which community resources the coverage pays. Medicare covers hospital and short-term services such as short-term rehabilitation in a skilled nursing facility. Family and friends can be a source of emotional, physical and financial support.
This article discussed care giving through a variety of aspects including perception, role, levels of care, and financial resources. The role of a caregiver can be extremely rewarding to self and the person for whom care is being given. What is most important to remember is that caregivers recognize services available to them and the importance of self-care.
Dr. Geri Adler is Assistant Professor in the Graduate College of Social Work at the University of Houston. She has over twenty years of clinical experience working with individuals with Alzheimer's disease and their families. A Hartford Geriatric Social Work Scholar, Dr. Adler's funded research focuses on driving and dementia. She has multiple publications in this area including recent manuscripts in Dementia: The International Journal of Social Research and Practice, Traffic Injury & Prevention, The Gerontologist and Health and Social Work.
Q. Why is driving and dementia a concern?
Over five million Americans are estimated to have Alzheimer's disease (AD) and related dementias and 30% to 50% of persons with dementia continue to drive. Although some individuals with mild dementia can drive safely, for almost all, driving will become impossible at some point as the disease progresses.
Research has found that drivers with dementia have a higher crash rate, become lost in familiar areas, and make more frequent errors in performance than other older drivers. In addition, because of poor judgment, lack of insight and a loss of reasoning ability some drivers with dementia may not even realize they having any problems. Therefore, individuals with dementia continue to drive when they are no longer able.
Being unable to drive is a serious loss of independence and mobility. It is not unusual for drivers with dementia to become upset, angry and even depressed when driving concerns are raised.
The sheer numbers of persons with dementia who continue to drive, the seriousness of the issue, and its effect on mobility, underscores the importance of addressing driving and dementia.
Q. What are some warning signs of driving problems?
It can be difficult to determine when a driver with dementia is no longer safe to drive. However, there are several warning signs or red flags that may indicate driving skills are declining and need to be evaluated.
Warning signs to watch for include:
becoming lost in familiar areas,
incorrect signaling,
improper speed – driving too slow or too fast for conditions,
driving the wrong direction on roadways,
decreased understanding of traffic signs,
confusing the break and gas pedals,
reliance on a co-pilot,
making poor or slow decisions while behind-the-wheel,
moving violations, tickets or police warnings, and
crashes or near misses.
Another indicator of problematic driving occurs when family members refuse to ride with the driver or do not allow others, such as grandchildren, to ride with driver.
Q. What are some ways to assess driving fitness and resources for driving decisions?
It is important to discuss driving concerns with a physician and to also have the individual with dementia's driving evaluated. Many physicians are comfortable beginning the discussion about driving reduction and cessation and to start the driving assessment process. The physician may ask the driver and family questions about the frequency, distance, circumstances of travel, familiarity with roadways used, use of a co-pilot, and any recent crashes and episodes of getting lost. Family may also be asked if they have any concerns about their relative's driving.
If there is any question about the individual's ability to drive safety, he or she will benefit further from a formalized evaluation. Testing can be conducted by a certified driver rehabilitation specialist (CDRS), a professional trained in driver education and training, or the State Department of Public Safety. An assessment may include a knowledge test as well as a behind-the-wheel evaluation. There is usually a fee for an assessment completed by a CDRS. Unfortunately, Medicare and private insurance are unlikely to reimburse for this service.
If the evaluation shows that the individual with dementia is able to continue to drive safely, his or her performance must continue to be revisited. Because many dementias are progressive, ongoing management and discussions about driving are needed. Driving modifications may also be suggested such as limit the individual's driving to off-peak or daylight hours, in familiar areas or in less complex driving environments.
If serious driving errors are apparent, the driver will be advised to stop driving. Discussions about "retirement" from driving must be handled sensitively. In order to be successful, family need to be supportive and participate in creating a workable transportation plan for their relative.
If a driver is reluctant to quit driving, different approaches can be considered to facilitate voluntary cessation. First, it is important to explore with the driver, his or her reasons for resistance. A conversation with a person whom the driver respects, such as a clergy or a police officer, may be able to persuade the driver to quit. Insurance ramifications are also important to consider. For some drivers, individual or group support can diminish the loss and provide opportunities to discuss concerns. For others, a prescription stating that the individual should no longer drive can add leverage.
If all fails authoritarian approaches are needed. In those situations, family members may need to disable the vehicle, move it to another location, hide or replace the keys, or even the sell the vehicle.
When an individual can no longer driver, resources for alternative transportation must be identified. Often friends and relatives can provide necessary transportation or can help to locate other options. Conversations with a social worker to identify community supports can be helpful, too. Finally, the person's driver's license should be replaced with an identification card.
Online Resources:
Several helpful booklets and online resources, designed to help family, friends and caregivers of older drivers with driving discussions and decisions include:
"At the Crossroads: A guide to Alzheimer's disease dementia and driving" and "We need to talk: Family conversations with older drivers" are available through www.thehartford.com
The "Physician's Guide to Assessing & Counseling Older Drivers" (http://www.ama-assn.org/go/olderdrivers) provides information about assessment, legal and ethical responsibilities as well as state licensing requirements and reporting laws.
To locate a Certified Driving Rehabilitation Specialist — www.aota.org/olderdriver or www.driver-ed.org or call at 1/800-290-2344
The aging populations' answers to this question are of significant importance as Kentucky prepares for the baby boomer population turning 60. The Kentucky Elder Readiness Initiative survey responses from the Kentucky River and Kentuckiana Regional Planning and Development Agency (KIPDA) areas were analyzed to obtain results from an urban and rural area on what respondents perceived about their current and future quality of life. The purpose is to provide rural and urban communities information about factors associated with good quality of life and future needs among their aging residents.
In Jenkins, Kentucky (Letcher County) a group of citizens are working together to ensure the future of the city. A major task on the group's agenda is to find funding for an Assisted Living Facility. It is hoped that by working with the local government, schools, health care facilities and other community organizations individuals can be educated about the aging population and find ways they can become involved.
Hazard Perry Wellness Program:
A combined effort of Hazard Perry Senior Citizens Center, Perry County Fiscal Court, Hazard Perry County Community Foundation and UK Center for Excellence in Rural Health a variety of exercise programs and equipment has been purchased. The wellness program was established at the senior citizens center and is open extended hours for seniors in the community. The hope is that by ensuring services are available to seniors it will promote a better quality of life.
KERI seeks to develop information and provide support to Kentucky's communities so that elders and their families are provided with the opportunity to age in place and enjoy the highest possible quality of life for the longest time. For more information on KERI go to: http://www.mc.uky.edu/keri/
Kathy Black, PhD, MSW, MPH, MSG. es Hartford Geriatric Social Work Faculty Scholar y Profesora Adjunta en la School of Social Work – campus Sarasota-Manatee – University of South Florida. Las áreas en las que la Dra. Black posee experiencia incluyen la planificacin de cuidados avanzados en los últimos años de vida, las directivas anticipadas, la comunicacin profesional sobre los cuidados de la salud y el envejecimiento-en-casa.
P: ¿Qué es el Envejecimiento-en-Casa?
R: El Envejecimiento-en-Casa se refiere a la gente que envejece en sus propios "hogares", o en el lugar donde ellos viven y desean seguir viviendo allí. La mayoría de los adultos mayores desean seguir viviendo en las casas en las que han vivido la mayor parte de sus vidas y muchos lo hacen; de hecho, la mayoría de personas de 65 años y más viven en lugares no institucionales y son dueños de sus propios hogares.
P: ¿Como puedo lograr Envejecer-en-Casa?
R: La posibilidad de seguir viviendo en el hogar generalmente depende de varios factores. Hazte las siguientes preguntas para ver si estás listo para envejecer-en-casa:
Estado personal de salud y necesidades: ¿Posee limitaciones mentales o físicas que afecten tu habilidad para manejarte en casa? ¿Eres capaz de satisfacer tus necesidades de salud en casa?
Familia y otras ayudas informales (como amigos, la iglesia, etc.): ¿Quién te cuidará si es necesario en algún momento? ¿Es esa persona capaz de brindarte los cuidados que necesitas?
Circunstancias econmicas (incluyendo finanzas y seguro): ¿Tienes suficiente dinero para pagar los cuidados que puedas necesitar en tu hogar? Los servicios de cuidado en el hogar suelen ser caros y generalmente no son cubiertos por el seguro. Ten en cuenta que Medicare provee cuidados de salud en el hogar por un período limitado de tiempo bajo circunstancias específicas y que el Seguro de Cuidados a Largo Plazo probablemente no pueda satisfacer tus necesidades de cuidado en casa.
Ambiente físico domiciliario: ¿Eres capaz de moverte por tu casa? Las escaleras y la falta de baños puede afectar la posibilidad de que te quedes en casa. Aunque estén disponibles, las modificaciones para agregar una rampa o un baño en tu hogar pueden ser costosas. También importante a tener en cuenta: ¿Puedes mantener tu hogar? Las reparaciones del hogar pueden ser costosas, difíciles o inseguras. ¿Has considerado a donde te mudarías si no pudieras quedarte en tu hogar? Muchas instalaciones con asistencia y otros lugares para recibir cuidados poseen listas de espera.
Servicios ofrecidos por tu Comunidad: ¿Qué servicios ofrece tu comunidad para ayudar a la gente que decide envejecer en su hogar? Las comunidades tienen diferentes servicios disponibles; algunos pueden ser gratuitos, de bajo costo o cubiertos por seguros como Medicaid, mientras que otros no; muchos poseen listas de espera. El gobierno local y tu Estado podrían brindarte algunos servicios, mientras que otros pueden ser privados o comerciales. Los requisitos para esos servicios también varían.
P: ¿Qué servicios hay disponibles para ayudarme a envejecer-en-casa?
R: Hay una gran variedad de servicios para apoyar el envejecimiento-en-casa; sin embargo, la disponibilidad de dichos servicios dependerá del lugar donde vivas. Generalmente, los servicios que se ofrecen para ayudar a que la gente envejezca en su hogar incluyen:
Cuidado básico del hogar: una persona que cocinará algo para tí o limpiará la cocina;
Cuidados médicos en el hogar: una persona que te brindará cuidados personales o cuidados médicos especializados;
Mantenimiento del hogar: podrás contratar a una persona para que cuide del jardín;
Transporte: transporte para ir y volver de la consulta con el médico;
Comidas entregadas en el hogar: comidas gratuitas o de bajo costo entregadas en tu hogar.
Necesitar varios servicios no es poco común, sin embargo a menudo es difícil conocer, acceder y controlar el rango de servicios que podrías necesitar. Los supervisores de casos geriátricos son profesionales empleados por organizaciones públicas o privadas para que te ayuden a acceder y controlar los cuidados que podrías necesitar. Puedes conseguir un supervisor de casos público a través de varios programas gubernamentales ofrecidos en tu área.
Puedes conseguir un supervisor de casos geriátricos privado a través de organizaciones como la National Association of Professional Geriatric Care Managers, 1604 N. Country Club Road, Tucson, Arizona 85716, de 8:00 a.m. a 4:30 p.m., MST Hora Estándar de la Montaña (durante todo el año; Arizona no tiene horario de verano), Lunes a Viernes, excepto feriados. El número de teléfono es (520) 881-8008; el número de fax es (520) 325-7925. El correo de voz te permite dejar mensajes durante 24 horas al día, siete días a la semana, o por medio de la página web: http://www.caremanager.org/
Para saber más acerca de los servicios de tu comunidad, contacte la Administracin del Localizador de Cuidados para Adultos Mayores "Administration on Aging's Eldercare Locator" para comenzar tu búsqueda de servicios que te ayuden a permanecer independiente en tu comunidad. Puedes contactar a una persona especializada en dar informacin sobre el Localizador de Cuidados para Personas Mayores llamando a la línea gratuita 1-800-677-1116 en días de semana, de 9:00 a.m. a 8:00 p.m. (ET). Hay personas especializadas en dar informacin que hablan español. También puedes acceder al servicio usando Internet a través del siguiente link: http://www.eldercare.gov/Eldercare/Public/Home.asp.
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• Para localizar a un trabajador social en tu área para que te ayude con asuntos respecto del envejecimiento, por favor pulsa aquí.
Studies have shown that caregivers of individuals with Alzheimer's disease are at an increased risk of mental and physical problems as a result of the strain that accompanies this role. Researchers have focused on the stress, sense of burden, and depression that caregivers experience. Little reference has been made to the feelings of grief and loss reported by caregivers.
1). What makes Alzheimer's caregivers sense of loss different from others? What is ambiguous grief?
Unlike the losses that caregivers of individuals with different illnesses encounter, caregivers of individuals with Alzheimer's disease experience losses over a longer duration of time (for some 20 years) and many of these losses are not socially recognized or addressed causing a situation of disenfranchised grief.
Caregivers of individuals with Alzheimer's disease and related dementia experience loss starting with the first symptom of the disease. Losses in the areas of communication, socialization, shared memories and the future, intimacy, roles and relationships, and a sense of normalcy have been identified in the literature as most commonly experienced by caregivers. These losses stem from the unrelenting cognitive changes that are occurring in the person with dementia.
Also, many caregivers are so focused on the tasks of caregiving (i.e. addressing activities of daily living) that they do not recognize these losses in their own life and the impact that unaddressed grief may be having on them.
Pauline Boss coined the term ‘ambiguous loss' to describe losses that possess some degree of uncertainty and force people into questioning their status with the lost object. For caregivers of individuals with dementia, they are faced with the fact that the individual with dementia is, as Boss stated, physically present, but psychologically absent. Thus, the familiarity with the diagnosed individual and what was once normal or standard within the relationship is suddenly changed. Therefore, caregivers may say, "This is not my husband even though he looks like my husband" or "My mother would never act like this", which all represent the ambiguity that has not engulfed their relationship with the diagnosed individual.
2. Does the caregiver experience a sense of loss when the person they are caring for is first diagnosed with Alzheimer’s disease and how does this sense of loss change throughout the disease?
Research has examined how grief changes throughout the course of the disease. Ponder and Pomeroy (1996) were the first to examine differences in grief at different stages of the disease. They suggested that grief is high following the diagnosis and then declines during the second through fourth years of the disease. Following the fourth year, the grief of caregivers tends to increase.
Meuser and Marwit (2001) were next to examine differences in grief at different stages of the disease. They found that grief, particularly in spouses was highest during the final stages of the disease. Similar findings were reported by Ott, Sanders, and Kelber (2007) who found that as the severity of the disease increased, the grief of caregivers also became more severe.
Every caregiver is different and will respond to the losses associated with the disease in unique ways. However, it is important to recognize that many caregivers do not associate what they are experiencing as loss; instead, they lump it into the broad categories of burden, depression, and stress. It has only been in the past 10 years that people have started distinguishing the experience of grief from these others experiences (see Meuser, Marwit, & Sanders, 2004).
3. What is the difference between depression and grief?
Many people confuse grief and depression because the symptoms can be quite similar. However, there are distinctions that are important to emphasize.
First, grief has a temporary impact on the individual, while depression can lost longer periods of time. This is not to diminish the impact of grief and the fact that individuals are forever changed as a result of the loss, but usually a grieving person is able to resume qualities of their life pre-loss overtime, while individuals with depression may have their overall level of functioning impacted to a greater extent for a longer period of time.
Second, grieving individuals are able to attribute their feelings of sadness and hopelessness to the loss, while individuals who are experiencing depression may not be able to identify the root causes of their feelings and mental health.
Third, grieving individuals are still able to enjoy and find satisfaction in certain aspects of their lives. While finding these activities may be challenging, once they are identified they are found to be helpful. Individuals who are depression may experience difficulty finding joy and satisfaction in any aspect of their lives.
Finally, an individual with depression may experience significant relief from pharmacological treatments. While these treatments may temporarily help a person with grief, they will not take away feelings of grief. For some individuals it actually prevents the grief work that is needed to occur, only prolonging grief reactions.
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