Family Caregiver Alliance – Kathleen Kelly, Executive Director
In California, there are over 5.88 million family caregivers providing unpaid care to a loved one. These family caregivers – unpaid relatives, partners and friends – form the largest long-term care workforce in the country. In California alone, it is estimated that family caregivers provide $47 billion dollars of unpaid annual care services.i
Today’s family caregiver is part social worker, part nurse, part financial manager, part household handy-person and all wife, partner, daughter, daughter-in-law, sister or grandchild. As a society we are living longer with more complicated chronic conditions and as a result, today’s caregiving is well beyond Activities of Daily Living (ADL’s) and Independent Activities of Daily Living (IADL’s). Almost half (46%) of family caregivers perform medical tasks normally associated as “nurse delegated” functions, typically with little training from health and social service systems.ii
Well over half (56%) of the 5.88 million family caregivers in California are part of the Baby Boomer generation, between the ages of 45 and 64. For these mostly adult children, caregiving is a juggling act among their careers, families, and parents. Almost two-thirds (64%) are holding down full-time (55%) or part-time (9%) employment, in addition to providing an average of 15 to 20 hours a week of assistance to an older adult.
Three-quarters of California caregivers are women – meaning there are roughly 4.4 million women in California trying to successfully manage this juggling act. These women are more likely to step out of the workforce to provide care. Providing this care is not without costs, as family caregivers suffer significant physical, mental and financial consequences due to the toll of caregiving.
Many family caregivers provide care at the expense of their own health. They experience chronic stress, especially those caring for an adult with multiple chronic care conditions, or cognitive impairment such as Alzheimer’s disease and related dementias. This chronic stress is associated with a variety of adverse health effects – including depression, anxiety, obesity, substance abuse, and sleep disturbance. Between 40 and 70% of caregivers have clinically significant symptoms of depression, and women who provide care are six times as likely to suffer from depression or anxiety.iii
Family caregivers often sacrifice their financial resources to provide care, and frequently reduce their work hours to be with their loved one. One-third of working women report that they have decreased their work hours, passed up a promotion or training (29%), switched from full-time to part-time (20%), or quit their job entirely (16%). For those who significantly reduce their work hours or leave the workforce to provide care, the financial impact can exceed $300,000 over their lifetime. One study found that nearly half of Baby Boomer women caregivers experienced financial hardship as a result of caregiving.
POLICY OBJECTIVE #1
The Legislature and the Governor should enact state legislation to integrate family caregivers into health and social service programs across state departments.
Family caregivers are the backbone of the long-term services and support system for the state. However, they are largely overlooked in terms of provision of explicit direct services for caregivers, and are not fully recognized nor integrated within the health and social service system.
Moving toward integration requires adoption of performance measures that improve outcomes for both the client and the family. In turn, these performance measures will require modifying current clinical practice within service settings. These measures must be consistent across programs in order to provide meaningful information that supports providers and clinicians and drives improvement on quality of services.
Identification and assessment of family caregivers, using a uniform set of measures, is the starting point for integration. It is an opportune time to include a caregiver assessment measure as the state recognizes the need for a uniform assessment instrument for all long-term services and supports (LTSS) that span state departments and programs. This would include programs funded through MediCal waivers, Older Americans Act, general revenue and other federal and state funded LTSS programs.
Currently, there are no family caregiver assessment measures in the In Home Supportive Services, Multipurpose Services Senior Program, Adult Day Health Care in any of the Client Assessment Instruments used within those programs. While the Caregiver Resource Centers (CA Department of Health Care Services) have operated with a uniform caregiver assessment tool since 1987, there is no uniform caregiver assessment instrument in the National Family Caregiver Support Program, Title IIIE, Older Americans Act (CA Department on Aging).
In a current study underway by the Public Policy Institute, AARP and Family Caregiver Alliance entitled “National Inventory of Assessment Instruments and Process for Informal Caregivers within Home and Community Based Service Medicaid Waiver Programs”, there are 12 states that include an assessment of the informal caregiver within their client assessment instrument. In reviewing states that have successfully integrated family caregivers within service systems, several key factors have emerged:
- A common understanding of and support for family caregivers by leadership in government administration. community health and social service providers.
- Integration of departments that provide services to adults with chronic care conditions through an electronic client record system, common assessment, and protocols for seamless referrals across programs.
- A uniform caregiver assessment instrument that is used to determine need for services or supports and referrals to other departments or programs and also provides information about level of support provided by the family caregiver.
- Ability to analyze the client and caregiver data to determine outcomes improvement on measures of caregiver capacity to care or well-being, cost savings or background characteristics of family care systems.
If a care plan relies on informal support provided by families and others, then an assessment of the caregivers’ needs should be conducted and services provided to sustain care their efforts and promote their well-being.
A. The Legislature should request that the California Research Bureau:
- Undertake a study to assess uniform caregiver assessment measures in other states.
- Develop a report for the Legislature by January 2014 that highlights common uniform caregiver assessment measures, identifies the cost of development and implementation, and reports on the outcomes of caregiver assessment within the care plans.
B. The Legislature should pass and the Governor should sign legislation that:
- Requires the Health and Human Services Agency to review the California Research Bureau report (identified above) and develop a uniform caregiver assessment tool by January 1, 2015, to be incorporated into required client eligibility and assessment instruments used in MediCal waiver services (In Home Supportive Services, Multipurpose Services Senior Program, Community Based Adult Services) and in the Coordinated Care Initiative.. This assessment information should be part of the client record, and the Health and Human Services Agency should develop protocols for care planning and provision or referral of caregivers to appropriate services within the community.
- Requires a uniform assessment be used with direct caregiver support programs (Title IIIE, National Family Caregiver Support Program; Caregiver Resource Centers) that indicate priority needs of the family caregiver, tailored responses for the care plan and outcomes of the interventions provided
- Mandates the inclusion of consumer representatives – such as family caregivers and advocate groups representing family caregivers – on all public task forces, advisory committees and workgroups across departments concerning health care and long-term service and support programs.
POLICY OBJECTIVE #2
The Legislature and the Governor should augment the budget for the Caregiver Resource Centers to increase the level of services and support for families in the state.
The California Caregiver Resource Centers (CRCs) were established in 1984 to provide high quality services to support family caregivers, ages 18 and over, of persons with adult-onset cognitive impairments across the state and without regard to income. The CRCs use a uniform caregiver assessment to tailor consultation, training and other services to the specific needs of the family.
Currently, California budgets $2.9 million general fund dollars for the maintenance of the Caregiver Resource Centers, down from $12 million in 2007. In addition, there is $15.4 million in federal dollars through the National Family Caregiver Support Program (Title IIIE, Older Americans Act) administered by the Area Agencies on Aging. California’s total annual investment in direct support services for family caregivers have decreased exactly as the need has increased in the state. We need to better support those who provide the majority of care in our state, especially when the growth rate for those over 65 is expected to be 15% in the next five years. With the shift to a rapidly aging population, the number of family caregivers is also expected to rise.
A. The Legislature should convene an informational hearing on the Caregiver Resource Centers that:
- Reviews the services they currently provide, as well as the services they previously provided before budget cuts.
- Includes testimony from Caregiver Resource Center administrators, staff and caregivers that utilize the services.
- Assesses the funding that would be needed to restore previously eliminated services.
B. The Legislature should pass and the Governor should sign a bill that:
- Institutes a gradual increase in general fund dollars to provide a minimum combined total of $27 million to support caregiving families of older adults in the state.
iPublic Policy Institute, AARP, “Valuing the Invaluable: The Growing Contributions and Costs of Family Caregiving” 2011 Update, accessed January 9, 2013,
iiPublic Policy Institute, AARP; United Hospital Fund, “Home Alone: Family Caregivers Providing Complex Chronic Care”, accessed January 9, 2012,
iiiFamily Caregiver Alliance Fact Sheet. “Women and Caregiving: Facts and Figures”, accessed January 4, 2013,
by Kathleen Kelly, Executive Director,
Family Caregiver Alliance
In the last blog post I suggested five gifts family caregivers could use right now: 2 weeks of respite, Social Security credits for those who leave their job to provide care, a trained workforce and so on. Practical items to be sure. Today we turn to those gifts that capture public attention or change policy in a favorable direction. Here are my personal favorites in this category:
Gift # 6: A National Day Without Family Caregivers
We’ve already set aside the month of November to honor family caregivers, but what if we were to have a national day without family caregivers? What if we got every elected public official to take care of our relatives for a day? Do you think they might look at these issues differently after a day of providing personal care, medication management, insurance wrangling, preparation of meals for special diets and fielding calls from siblings critiquing our handling of Mom’s care? What does that national one day of care cost? $129 million (arrived at via the $47 billion estimated value of informal care, divided by 365 days.)
Gift #7: Double the Funding for the National Family Caregiver Support Program
Doubling the funding would bring the amount to just over $300 million—or about $4.75 for every family caregiver in the country. Not a bad investment for an average value of informal care per year of $8000 per family. Hey!—Wait a minute . . . doubling the appropriation would amount to a little over 2 days of care nationally (see Gift #6). Do you think after a National Day without Family Caregivers, policy makers might see the value in supporting caregiving families? Doubling the support would be a boon to caregiving families everywhere.
Gift #8: Undercover Boss: Caregiver Edition
For a day, have the boss exchange places with an employee who juggles job, family and caregiving responsibilities. A sampling of daily challenges:
- Rise early and get Mom ready for the day,
- Wait for the morning aide, then
- Fight the traffic to get to work. While at work,
- Answer phone calls from Mom on:
- where her glasses are,
- why you moved the extra set of car keys,
- when you’re coming home, (etc.)
- Run home at lunch to make sure Mom takes her meds (since you live in a state without nurse delegated tasks to home health aides). Oh no! The afternoon aide has not arrived!
- Go into panic mode and call the home health agency to get a replacement—(and where are those darn power point slides for the presentation this afternoon!?!) . . . And so the list goes.
For this really to work, these back-up caregivers-for-a-day would, of course, be on their own . . . no spouses, administrative assistants or private case managers allowed to help.
Gift #9: A Seat at the National Policy Table Designated for Family Caregivers
We need an Institute of Medicine report on family caregiving that would raise the visibility of the issue and chart a course of future action. IOM reports often become the benchmark for implementation activities for years to come and carry the authority of solid recommendations for actions. Also, we need a National Center on Caregiving that would collect best practices, conduct research, provide technical assistance to health and social service systems on how best to integrate families into the care system and answer calls from caregivers across the country seeking help and advice on care issues.
Gift #10: An Understanding That Caregiving is Just Part of Life—Which We All Will Share in to Some Degree, Some Day . . .
And perhaps this is the most important message of all, especially for those in policy-making roles: at some point, all of us will be affected by illness or disability in our families or ourselves. The role of caregiver, is the giving of assistance, perhaps the receiving of assistance in the future. Often given without reservations, sometimes begrudgingly, it is done out of love, respect, loyalty, duty or expectation of reciprocity. Most simply, caregiving is about human relationships. It affects not just us personally but all in our tight network of family, our extended web of friends, the communities in which we reside, and ultimately, our entire shared society.
This list of ten gifts we hope can serve as a reminder—to those of you who know a caregiver—of the importance these compassionate folks serve in our lives; but for those of you reading this who are caregivers, remember that it is not selfish to give to ourselves too, throughout this season of giving and beyond. A family caregiver burned out from constant stress is not only shortchanging their relative, they may also be shortening their own life. Taking care of yourself may just be the best gift you will unwrap this holiday season.
The warmest of wishes for a wonderful holiday season and happy and healthy New Year to your family from ours here at Family Caregiver Alliance. -KK
by Kathleen Kelly, Executive Director, Family Caregiver Alliance
This time of year, our thoughts turn to family and friends, celebrating relationships and giving to others. I would like to list my own personal recommendations on much needed gifts that family caregivers could really use in the New Year.
Gift #1: Respite
Seriously. If we are serious about supporting families, let’s give those who care continuously for their family members unable to care for themselves, two weeks of respite a year . . . in exchange for the remaining fifty they spend caring. Everyone needs a substantial break—caregivers most of all.
Gift #2: Financial Security
Sadly, many family caregivers have to quit their jobs to care for ailing family members who can no longer manage on their own, and lack the financial means to pay for professional caregiving. With that, there is a loss of accrual of Social Security credits that can mean significantly lower income in retirement. Especially hard hit are women in lower income careers—and women remain the primary caregivers. Family caregivers should not have to choose between being there for family and having something to retire on themselves so that their own children aren’t forced to quit work to care for them as they age, (contributing to a continuing, frustrating cycle). But unfortunately, depending on the severity of a loved one’s illness, choosing to care for family can often mean facing a bleak economic future—especially since most understand that their efforts mean less cost to society. What we need is a way for those who find no other option than to leave employment to care for ill or aging family, to continue to accrue Social Security credits enabling them to live in dignity in their own “golden years.” It’s acknowledging the value of them and their efforts to their loved one and society.
Gift #3: A Trained Workforce
We hear about too many family caregivers handling medical-related tasks for their loved one that are ideally handled by trained professionals. We do these caregivers and their care recipients a huge disservice to not push for an increase in thorough, up-to-date and compassionate medical training for all levels of staff in the medical profession. Training for the workforce takes a number of forms: medical staff who are trained to include family caregivers as part of the care team; medical specialists, nurses and social workers who understand geriatric care issues and cognitive impairments; aides who are trained to handle behavioral challenges, and the basic challenge of taking just a bit of time combined with a bit of patience to listen to the patient, his or her family and especially, the family caregiver who knows that person best.
Gift #4: Patient and Family Centered Care
Family caregivers need health and social service systems that value informal caregiving. This means putting in place a formalized process for identifying caregivers, and assessing the unique needs of families. But it is not only assessment; it is a set of services and supports that should be tailored to each patient and their particular family situation that needs to be provided.
Gift #5: Paid Family Leave
So far, only two states offer paid family leave to employed caregivers. Every state should have this self-funded option through which those who need to care for family can temporarily leave their jobs to take care of relatives. The sticking point is the public will to pass legislation in every state and the development of the mechanism to collect and disburse funds within the state. In years past, the Obama Administration requested $10 million be set aside for states to develop those systems. Let’s make it our collective New Year’s resolution to get moving on this in 2013.
Family Caregiver Alliance
Family Caregiver Alliance is pleased to be a co-sponsor of The Women’s Policy Summit, scheduled for January 17, 2013, at the Sacramento Convention Center that will bring advocates and other California leaders together in a multi-issue policy forum to present their priority recommendations to improve the health and well-being of women and girls in California.
The Summit is “more than a conference.” It not only educates, it also sets the stage to advocate, with scores of leaders releasing proposals for policy and programs. Caregiving issues need to be represented and we hope that family members and programs that support caregivers will attend, get educated and let their voices be heard.
And the issues could not be more important to caregiving families: health care reform, mental health, aging, health disparities and gender, paid sick days and paid family leave, getting more women appointed to corporate boards, getting more women elected as public officials, and more. The conference is hosted by the California Center for Research and Women and Families and is Co-Sponsored by over 60 legislative and state organizations representing women’s issues.
For more information and to register for the conference, go to www.ccrwf.org
(. . . Yes, even though it’s Wednesday. We’ll actually accept your donations throughout the holiday season. As it says above, the giving just starts on Tuesday!)
Family Caregiver Alliance
This is the first year for Giving Tuesday, a nationwide effort to focus on charitable giving during the holiday season. Family Caregiver Alliance is a supporter of Giving Tuesday and urges all readers to consider a donation to FCA to continue our work with family caregivers. For over 35 years, FCA has called attention to the needs of family caregivers, provided much-needed practical support, planning and direct services and continued to advocate that caregivers be recognized, assessed and supported across health and social service systems.
This past year, FCA has . . .
- been a soothing voice on the phone to thousands of caregivers;
- held Caregiver Colleges teaching direct care skills;
- written comments to CMS (Center for Medicare & Medicaid Services) on proposed rules to assess caregivers in waiver programs;
- been interviewed on television, radio and print media on caregiving issues;
- been a vetted source of consumer information for families and professionals;
- counseled families on emotional issues related to caregiving;
- held retreats for caregivers and camps for adults with Alzheimer’s disease;
- testified during budget hearings on the need for funding supporting caregivers;
- conducted short-term groups on caregiver depression, anger, and behavioral management;
- visited over 400 families in their homes in the San Francisco Bay Area to assess their needs and develop action plans to guide caregivers in decisions and support;
- held training conferences throughout the Bay Area and webinars nationally that reached thousands of consumers;
- subtitled direct care videos into Spanish and posted them on You Tube;
- presented at five national professional conferences on service and policy research;
- provided respite to caregiving families;
- published policy briefs and provided technical assistance to states and program developers;
- sponsored robust online support groups with over 2000 members;
- participated in national and state coalitions that advocate for family caregivers;
- held the first public-private partnership event bringing together nonprofits, technology, services, media and venture capital to forge new relationships;
- honored the John A Hartford Foundation for outstanding leadership in support of family caregivers and the four winners of the Rosalinde Gilbert Innovations in Alzheimer’s Disease Awards
. . . and the list continues.
Help us continue our work on behalf of family caregivers everywhere with a donation to Family Caregiver Alliance this year. Give the week of Giving Tuesday so we can continue giving throughout the year.
Guest Blogger: Francine Russo, speaker and author “THEY’RE YOUR PARENTS, TOO! How Siblings Can Survive Their Parents’ Aging Without Driving Each Other Crazy” [Illustration by Andrea Orvik]
Family Caregiver Alliance
“I’m really worried about the holidays,” Leslie told me. I’ve got everything under control with my Mom and Dad. Then my sisters and their families come. I tell them that Mom and Dad tire easily and to make sure the grandkids don’t exhaust them. But they don’t listen to me. Mom and Dad can’t say no, everything gets crazy, and I’m the one who has to deal with the resulting mess.”
In case you haven’t guessed, Leslie’s the caregiver for her mom and dad. Her folks, now in their 80′s are still in their own house, but Mom’s got diabetes, hypertension and arthritis and Dad’s slowing down physically and seems to be even more confused and forgetful lately. Leslie’s two sisters, who live out of state, visit once or twice a year. Mostly they don’t acknowledge their parents’ aging, or, if they do, Leslie says, they blame it on her. “They told me I should make sure Mom and Dad get more exercise and eat more blueberries and fish to boost dad’s memory. I can’t make them do that if they don’t want to!
Sound familiar? Hers is a typical caregiver lament around this time of year. If your situation is like hers, is there any way to make things better? Well, …maybe. At least a little.
All your siblings—and in-laws and grandkids—are going to have different perceptions, needs and expectations. Your older sister will want to spend as much time with Mom and Dad as possible or have them play with the grandkids as much as they can. And, yes, she will try to take charge just like she did when you were kids. Your younger sister will do whatever it takes to keep the peace. And your parents will brighten up at the sight of everyone, announce they’re couldn’t be feeing better, and make you sound like a liar or a drama queen.
If you are like many caregivers, you will want to try to maintain Mom and Dad’s routines, and keep control of all the things that need doing. You will attempt to protect your parents from exhaustion while finding yourself “educating” your sisters and their family that your parents aren’t up to doing all of the activities that they once did. But if you fight to keep things “normal,” you’re likely to exhaust yourself fighting reality: holidays are not normal. Now, you may be right about everything. Yes, Mom and Dad may get overtired and feel a little worse after everyone leaves. And, yes, you will be left to deal with the results. But you can feel less stressed if you have a sense of perspective about what’s really at stake.
Will your parents face any real danger from the holiday festivities? If they’re like most people, the answer is probably not. If you take this as your starting point, you may be able to make the holiday less difficult and more enjoyable. Here are some suggestions:
- Accept the reality that holidays are exceptions to routines and don’t fight hard to keep them “normal.” That can save you from feeling frustrated and resentful.
- Try to delegate some of the things that will need doing by talking to your siblings ahead of time; You can explain that you will be thrilled to see them but also overwhelmed. Try to get them to commit to particular tasks like keeping your parents house picked-up when visiting, taking full responsibility for monitoring their young children, and, if it makes sense for your family, honoring an early evening quiet time so that you and your parents can get a good nights sleep or at least some private time for yourselves.
- If you’re hosting, now is the perfect time to change some of the “but we’ve always done it this way” meal traditions. Consider making life a little easier for yourself, especially if others won’t help. This might mean eating out rather than in, or bringing in prepared food and serving it buffet style on paper plates. Yes, even though it’s the holidays!
- If your siblings don’t understand your parents’ condition, try to prepare them by composing and sending a letter – or asking a nurse, social worker or a respected family friend to do so- prior to their visit. Describe your parents current typical day and their current health concerns. Of course, even if you can tell your family yourself in great detail, everyone will be seeing your folks through their own fears and wishes—based on their own relationship with each parent. And they will hear anything you tell them through the whole history of your relationship with them.
- Parents may have long provided extra emotional support for a troubled sibling or ‘kept the peace” among feuding siblings. The dynamics of the family will definitely change once your parents are no longer interested or able to maintain those roles. Encourage family to visit even though the declining effects of your parents chronic health conditions or increasing frailty may make a sibling feel vulnerable. But remember, it’s not your job as the caregiver to take over your parents former role as peacekeeper. Set your limits and be clear about them with others.
- If a relative notices that Mom walks more slowly or Dad seems a little “out of it” and they blame it on you, try, try not to get defensive and attack with the guilts: (Well, if you came around a little more… or You do nothing so don’t you dare criticize me) They may defend themselves from feeling guilty by getting angry with you. Say as calmly as you can: I’ve been trying to tell you how their medical issues are affecting them, but I know it’s hard to understand when you don’t see them first hand. Can I arrange a phone consultation with their doctor so you can hear what’s going on and ask her your questions? Remember, the doctor will need your parent’s permission before talking about any of your parent’s health care concerns with family.
- Consider inviting an objective third party— social worker knowledgeable about family caregiving or a geriatric care manager—to convene a family meeting for one of the days before or after the holiday. This can occur by phone or in-person although in-person is best. This professional can help get family members on the same page, defuse family tensions and even help distribute caregiving tasks. Including your parents, if they are willing and able, empowers them to feel more in-control of their environment and helps everyone hear preferences and wishes about long-term care needs directly from the source.
- If you and your family see the need for someone else to coordinate your parents care—for example maybe you need to return to work – arrange to meet with a geriatric care manager (GCM). These professionals will charge a fee to come to the house, assess your parents’ condition, needs and options going forward. While writing this blog I wondered whether GCMs work during the holidays. I called one excellent one I know to ask. “Are you kidding?” she said. “Holidays are our busiest times of the year!”
- Having fun when siblings visit is important. Accept invitations to go play even if it doesn’t work for your parents to join you. Going skiing for the day with your little sister or allowing your siblings to stay with your parents while you enjoy a guilt-free massage and lunch with a friend can do you a world of good. Everything may not go perfectly while you are away but it probably will be good enough. Say “yes” to opportunities that both feed your soul while giving your siblings the opportunity to help while they are in town.
Family get-togethers can be fabulous or fearful or some combination of the two. However large they loom, they also present an opportunity to get everyone on the same page—or at least, on the same chapter—and help ease the way for the duration of the caregiving passage ahead.
Try to let go a little and enjoy a little!
The Family Caregiver Alliance fact sheets on Caregiving with your Siblings, Holding a Family Meeting, and Taking Care of You: Self Care for Family Caregivers offer more tips and suggestion on this topic.
Can you provide our readers with an experience of yours, navigating the holidays with siblings while caregiving?
Family Caregiver Alliance
Caring for a parent, spouse, adult child, partner or friend with a chronic health problem is an every-day affair. Sometimes boring, sometimes unreasonable, sometimes over-the-top demanding, sometimes rewarding . . . and always on your mind.
Knowledge about a health condition, guidance to providing the best care, and special tips for support and self-care, can pave the way for a smoother road ahead.
We know how hard you work, and want to acknowledge your role as caregiver to someone important to you. As a special thank you for all you do—and to remind you of the various ways that FCA can be there for you—we’re posting this special ‘resource reminder’ blog entry as our way of wishing you a wonderful National Caregivers Month.
Recently Updated FCA Caregiver Fact Sheets:
- Alzheimer’s Disease & Caregiving (English) – also in Spanish, Korean & Vietnamese
- Brain Tumor
- Caregiving & Depression (English) – also in Spanish, Chinese, Korean, Vietnamese
- Caregiver’s Guide to Understanding Dementia (English) – also in Spanish, Chinese & Korean
- Caregiving with Your Siblings
- Dementia, Caregiving & Controlling Frustration (English) – also in Spanish, Chinese
- Dementia: Is this Dementia and What Does it Mean? - (English) – also in Spanish, Chinese, Korean, Vietnamese
- Digital Technology for the Family Caregiver (English) – also in Spanish, Chinese
- Legal Issues for LGBT Caregivers (English)
- Legal Issues in Planning for Incapacity (English) – also in Spanish, Chinese
- Mild Cognitive Impairment (English) – also in Spanish, Korean & Vietnamese
- Selected Caregiver Statistics
- Special Concerns of LGBT Caregivers (English)
FCA Caregiver Fact Sheets Getting Updated Soon:
(follow us on Twitter and Facebook for updates, or check the What’s New section on our home page)
- Taking Care of You: Self-Care for Family Caregivers (English, Spanish)
- Advanced Illness Series: CPR, DNR & POLST
- Feeding Tubes & Ventilators
- Holding on & Letting Go
- Legal Planning for Incapacity
- Personal Care Agreements
- Relocating Your Elderly Parents
- Work & Caregiving
To see our full selection of fact sheets and other resources visit us online at www.caregiver.org. Remember that Family Caregiver Alliance (FCA) is there for you every step of the way.
Family Caregiver Alliance
A new Issue Brief entitled, Family Caregiving and Transitional Care: A Critical Review has been published by the National Center on Caregiving, Family Caregiver Alliance. The paper looks at the five models of hospital to home transitional care programs currently being replicated across the country and how those programs involve family caregivers as partners in care. Two models of physician practice-based transitional care programs were also examined.
Some key findings are: family caregivers receive inadequate support during transition between setting and little research has been conducted on how family caregivers perceive their own roles and needs during transitions. Second, involvement of family caregivers can improve patient outcomes and continuity of care but families should not be expected to provide complex medical care in the home, especially without training or in-home support from professionals. And last, there needs to be a greater focus on long-term services and supports as part of any transitional care program.
While health professionals are increasingly recognizing the need to work with family caregivers, we must align both the financing for these efforts, and also the training and practice guidelines to involve family caregivers as part of the care team.
The full report PDF can be downloaded directly from our website (www.caregiver.org); or you can click on the report link from the What’s New section on our homepage.
Family Caregiver Alliance
Maria and Charlie have been married for 60 years and remain very much in love. They are no longer able to drive on their own and require the help of their adult daughter to take care of the house when Charlie’s arthritis flares up. Maria and Charlie, near 85-years of age, still enjoy spending time with one another and have found that intimacy helps maintain their bond. While sex isn’t as big a part of their relationship as it was 40 years ago, the couple still wants to be intimate together despite their physical limitations―a topic that makes their adult daughter rather uncomfortable.
The Statistics on Sexuality & Seniors
As a society, we think of sex after a certain age as negative, or even “gross” to younger individuals. However, as medical advances and differences in lifestyle allow seniors to live longer than ever before, the number of sexually active seniors is increasing. According to a study of 1,300 individuals over the age of 60 by the National Council on Aging, 61% of the men and 37% of the women surveyed reported being sexually active.
While sex in senior marriages can be easier for family caregivers to accept, there are also situations in which single seniors, who have outlived a spouse or been divorced, may find themselves in relationships during the later stages of life. In the course of these relationships, it is not uncommon for sexual desires to surface―just as they would, for a younger couple. However, age, medical conditions and living arrangements can make these sexual encounters slightly more difficult to manage.
Tips for Caregivers
Bringing Up the Issue
Talking about sex and intimacy may be viewed as taboo for some seniors. Meanwhile, others may embrace their sexuality and be more open to discussing their situation with family caregivers. While discussing your elderly mother’s relationship with her 74-year-old boyfriend may be just as awkward of a situation as when she chatted with you about the birds and the bees when you were 16, communicating about the subject may help both caregiver and care recipient feel more at ease.
Consider bringing up the topic gently, perhaps by asking how the relationship is going and using terms such as “sleeping over” if words like “sex” create an environment that causes you or your care recipient to shy away from the conversation.
The health of seniors engaging in sex, either in or out of marriage, can be a major concern of caregivers. Heart conditions, or degenerative memory diseases such as dementia, can be problematic. Caregivers can encourage seniors to ask their physicians if they are healthy enough for sex, and if so, if there are any precautions they should take. One important item for seniors to discuss with their doctors is sexually transmitted diseases. Seniors are not immune to diseases such as AIDS, chlamydia, gonorrhea, etc. Caregivers may ask health care providers to bring the topic up and discuss prevention if the topic is too sensitive or embarrassing for the caregiver and care recipient to discuss together.
Facilitate Relationships with Care
One of the most difficult areas for caregivers, especially when dealing with relationships of single seniors, can be knowing when sexual relationships are or aren’t appropriate. As a caregiver, it is important to know that the relationship is consensual for both parties. Sometimes, this can be as simple as prompting your loved one with questions, or working with other members of your caregiving team to help supervise and watch for cues that the relationship is desired by both parties. Depending on the level of dementia, this can be hard to ascertain, and caregivers should be aware that consent may be momentary, but that doesn’t mean that it is not desired.
Caregivers can play a part in senior relationships by providing transportation, or even facilitating “sleepover dates” that allow seniors to be near each other in a safe environment. While privacy in these situations is important, depending on a senior’s condition, having a caregiver nearby―or access to a medical call device―can help ensure that assistance is nearby in case of a medical event.
Residential Care and Sexuality
Should a loved one move into residential care, sexual relationships are often frowned upon. A recent study published in the Journal of Medical Ethics (June 25, 2012) found that elderly residents are regularly and needlessly denied consensual sex because of concerns regarding safety, ageism and potential repercussions from family members. As a caregiver you may be called upon to help navigate with the facility, and possibly also the other residents family, ways that the care recipient can continue to enjoy this normal and healthy part of aging.
All people are sexual, and those who serve as the primary caregiver of an elderly loved one should be aware (personal comfort levels aside), that seniors―whether completely healthy or with frailties and afflictions―are still likely to experience sexual desires during the course of a relationship. If the senior you are caring for is not in a relationship, that does not mean that sexual feelings are not present. Self sexual stimulation is common, and older individuals, even one with a physical or cognitive disability, should be given privacy to allow for the expression of his/her sexuality.
While encountering someone you care for in a sexual situation may be embarrassing or uncomfortable for any/all parties involved―especially for adult children caring for a parent―it’s helpful to remember sexual drive as a very natural impulse within us all, from puberty on through the end of life. By helping seniors seek an open dialogue about their sexual health alongside their standard medical care needs, family caregivers can help their aging loved ones reap the positive benefits of a healthy sexual relationship.
Content contributed by Clear Care Online
Family Caregiver Alliance
Earlier this year, Mark’s world was turned upside down when his mother’s Multiple Sclerosis took a turn for the worst, leaving her in a wheelchair and unable to care for herself as tremors and weakness made it difficult to even prepare her own breakfast. Since Mark’s mother and father have been divorced since he was a toddler, the role of being his mother’s primary caregiver has fallen to him at just 16 years of age. Now, with so much concern for his mom’s wellbeing, Mark has trouble focusing at school and the former straight-A student is trying to figure out how to make up for the days of school he misses when his mom is just too ill to leave alone.
Youth Caregivers Face A Unique Situation
While the vast majority of family caregivers struggle to strike a balance between different areas of their lives, such as work and a family of their own, young caregivers like Mark are faced with the unique problem of caring for a loved one while they still need care themselves. And while adult caregivers may have the option of taking leave from work, or reducing work hours, students are forced to find ways to continue their studies while taking on duties ranging from increased household chores to helping manage a parents’ medication schedule. All this while worrying that they may lose one of the people that they love most.
The stress of balancing these issues can be overwhelming for a mature adult; let alone a child or teenager who is still developing the management of their emotions, fear and stress. In fact, a 2006 study conducted for the Bill & Melinda Gates Foundation by Civic Enterpises found that a startling 22% of high school dropouts leave school to care for a family member.
Providing Support for Youth Caregivers
According to a 2005 report by the National Alliance for Caregiving, there are at least 1.3 million caregiving youth between the ages of 8 and 18 in the United States. However, many researchers believe that this number is low, as some families are reluctant to share their caregiving situation. Many ill, disabled or aging parents and their children are embarrassed by their need for assistance and are unwilling to volunteer information on their household needs with school or social services officials. This means that youth caregivers may be struggling in school or at home and potential resources—like teachers or special support programs—are unable to offer assistance that may help relieve some of the stress.
Caring for an ill or disabled parent or loved one is frightening at any age, and adult support systems in a youth caregiver’s life are likely to be understanding of this. While some schools offer innovative support programs especially for young caregivers, even those without programs in place may be able to offer support for youth caregivers that help to manage stress and keep kids in school. If you are a young caregiver, or a parent who requires the assistance of your child to manage a medical condition, sometimes reaching out is the first step to finding help. You may start by reaching out to people and resources below:
- Family members and friends can be resources for sharing caregiving duties while youth are at school, as well as giving young caregivers a trusted individual to talk to when their parent may not be available.
- School guidance counselors may be able to offer information on any special programs for youth caregivers.
- By talking to educators, like a trusted teacher, about your home life, you may find flexibility in assignments and support to help you succeed at school in the face of adversity.
- Local chapters of national organizations, such as the MS Society or the Alzheimer’s Association, may be of assistance in providing links to youth caregiving support groups.
- Local social service agencies may be able to help with financial assistance for in-home care or provide links to emotional support resources for the whole family.
There’s no doubt that youth caregivers face unique and difficult challenges as they work to complete their education, enjoy their youth and ensure their loved one is well cared for and safe. Without assistance, these children and teens are at a high risk of leaving school and missing out on a wealth of opportunities over the course of their lives. However, with a support network of other family members, educators and community resources, young caregivers will have a better chance of successfully navigating the challenges of growing up as the caregiver.
Content contributed by ClearCare Online