Changes in the medical arena are having a profound impact on society. The advent of preventative treatments, early diagnosis, and new corrective procedures are allowing people to live much longer than before. However, with longer life, comes an entirely new set of challenges.
As people live longer, the need for Caregiving is growing. More so than ever before, Virgin Islanders are finding themselves as caregivers to aging loved ones and as this trend grows, so does the need for new programs and services that will help working caregivers balance caregiving with raising a family, developing a career, and living a full life.
AARP Virgin Islands has been monitoring the changes in the community for several years and has been urging residents to do what they can to prepare for the changing demographics. Years ago, AARP advocated for legislation that would allow homeowners to renovate their homes so that they could age in place. Changing just a few characteristics of the home, (such as: a ramp to the front door, wider front doors to accommodate wheelchairs or walkers, and a main floor bathroom which could accommodate usage by someone that uses a wheelchair) could prevent the need to move to a nursing home.
Now AARP VI wants to focus on the programs and services that the Government can develop to aid Caregivers. However, before AARP could begin advocating for new programs, it needed to get more information about the Caregiving population in the Virgin Islands. So, in early April AARP Virgin Islands commissioned a telephone survey of 800 residents age 45 and older to learn about their experiences with family caregiving. The interviews occurred between April 10 and April 17, 2015.
One of the most important pieces of information resulting from this study was the fact that there are approximately 12,600[i] caregivers presently providing care to someone in need. AARP’s Public Policy Institute (PPI) estimates that the value of this caregiving is worth $97-million annually[ii] and that the average caregiver, if paid, would be earning $8.27 per hour[iii]. These figures are incredible for a community as small as the Virgin Islands. However, they only serve to underscore how significant the act of Caregiving has become in the Territory.
To better understand the scope of Caregiving in the Virgin Islands, AARP segmented each telephone interview into questions on the following topics: Family Caregivers, Working Family Caregivers, Living Independently, Respite Care, The Caregiver Advise, Record, Enable (CARE) Act, and Tax Credit for Family Caregivers. Each section helped the researchers learn more about the challenges faced by VI Caregivers and what types of assistance would be more meaningful.
The first section, Family Caregivers, revealed that Virgin Islanders age 45 or older believe they are very likely to become caregivers in the future, with (17%) [iv] either currently Caregiving or (38%) having been a Caregiver in the past. Of those responding to the survey, those who had never been a Caregiver (53%) [v] feel somewhat certain they will become a Caregiver in the future.
Drilling down a bit more, AARP surveyors reveal that more Virgin Islands Caregivers are women (53%) over 55 years old (68%). They are likely to be married (52%), have some college education (64%), and are employed (50%.) The average age of the person they care for is 78 years old. When queried about the types of tasks that Caregivers preform, seven out of ten respondents say that they performed complex care like medication management (72%) [vi] and other medical tasks (69%) [vii] However; medical care is not the only tasks that family Caregivers perform. Eight out of ten Caregivers help with household management (87%), preparing meals (87%), shopping (83%), and transportation (79%). More than six in ten are also helping to manage finances (62%). [viii]
When asked about the future, VI respondents (70%) indicated they believe they will provide care again in the future. They say that they feel it is important to do so for their loved ones so they may remain living independently in their own home. Additionally, (95% [ix]) of respondents say that having resources and training are extremely important factors that allow family caregivers to continue providing in-home care.
Asked about how they, as Caregivers, are dealing with stress, 47% of the respondents reported feeling emotionally stressed and another 30% indicated that they are financially stressed. Many Caregivers reported that they had difficulty getting rest (49%), or exercising regularly (40%), keeping a healthy diet (25%) or visiting their own doctor (22%). They also expressed feeling stressed about trying to balance their work and family (49%) and take care of their own household (30%). [x]
Working Family Caregivers
The second portion of the telephone survey focused on the impact caregiving was having on working Virgin Islanders. Of those Caregivers who work, 68% indicated that they needed to modify their work schedules by taking time off or going to work early or late to provide care. Others have taken a leave of absence from work (38%), gone from working full-time to part-time (13%), or given up working entirely (10%) to provide care to a loved one. [xi]
Of those who alter their work schedules to accommodate caregiving, more than one third or (38%) indicated they do so weekly and more than 81% of these caregivers adjust their work schedules once or more within a month to provide care. [xii]
One of the most important questions that the survey asked Virgin Islanders was where they wanted to live when basic life tasks became more difficult. Respondents indicated they wanted to live at home with caregiver assistance (77%), in an assisted living facility (10%), in a nursing home (9%), and a small percentage (4%) were unsure where they wanted to live.
With the large number of respondents (77%) indicating they want to live at home with caregiver assistance, it is critical that steps be taken to determine what programs and services are most needed and find ways for them to become routinely available. One important element that current Caregivers indicated was important in the future to allow individuals to age in their homes was training. Ninety-three percent (93%) [xiii] of those surveyed said that Caregiver training was extremely important to allow family caregivers to continue to provide in-home care.
Identified among the top community services that Virgin Islands respondents believed to be very important to help people remain in their own homes were: well-trained certified home health care providers (93%), visiting nurses (92%), a central place for caregiving information (89%), hospice (85%), breaks for family caregivers (84%), chore homemaker services (83%), community centers (81%) and home delivered meals (80%). [xiv]
Without a doubt, Caregiving can be stressful and can have a significant toll upon the health and wellbeing of the caregiver, especially when there is no opportunity to balance stressful periods with restful ones. Of the survey respondents, (47%) [xv] indicated feeling emotionally stressed and (30%) [xvi] also felt financially stressed. It is no wonder that (93%) [xvii] of the respondents supported a respite care proposal where short-term help could be provided from a home health aide so that the family caregivers could take a break from their duties.
The Caregiver Advise, Record, Enable (CARE) Act
The Caregiver Advise, Record and Enable (CARE) Act is a piece of legislation that will help unpaid family caregivers when their loved ones go into the hospital and again when they transition back home.
The Care Act legislation features three important provisions that require the hospitals to: 1) provide instructions on the medical tasks the family caregiver may need to perform at home; 2) keep a family caregiver informed of major decisions; and 3) like transferring or discharging the patient and to engage with caregivers by recording the name of the caregiver when a loved one is admitted into a hospital. [xviii]
Virgin Islanders who were asked about the Care Act’s provisions were wholeheartedly in support of passing such legislation in the Virgin Islands. Ninety-six percent (96%) [xix] of those asked supported the Act’s requirement for hospitals to demonstrate medical tasks to caregivers. Eighty-nine percent (89%) of those asked supported requiring hospitals to keep caregivers informed of major decisions and (84%) approved of requiring hospitals and care facilities to record caregiver information upon admission.
Training for caregivers scored highly among those surveyed with nearly all (97%) [xx] of those who were current or past caregivers saying it is important for them to receive training or instruction on medical tasks they needed to perform upon hospital discharge of a loved one. Two thirds (66%) [xxi] indicated that a loved one or family member was hospitalized during a period of time while they were providing care. Of those caregivers, more than half [xxii] (55%) say they did not receive a live demonstration of any medical tasks that they would need to perform.
Tax Credit for Family Caregivers
When asked about the state offering an income tax credit for unpaid caregivers who incur expenses for the care and support of older family members that live with them, Virgin Islands residents (89%) [xxiii] overwhelmingly support the proposal.
The survey revealed that the majority of current and former caregivers (74%) [xxiv] used their own money to help provide care. Additionally, three in ten (30%) said they made modifications to their homes and one in six (15%) moved into another home to accommodate the needs of their loved one. Respondents indicated that care was provided in a myriad of ways with eight in ten helping the loved ones in their care with household management activities like chores (87%) [xxv], preparing meals (87%), shopping (83%), and transportation (79%). These household tasks were performed in addition to complex medical tasks like medication management (72%) and other medical tasks (69%). More than six in ten (62%) also helped manage finances for their loved ones.
Armed with the statistics that demonstrate the needs and desires of Virgin Islands caregivers, AARP Virgin Islands is working to help ensure that the caregiver desires expressed in the survey one day become a reality. Information and resources were consistently identified by Caregivers as one of their most important requirements. To this end, AARP VI is assisting local agencies print and distribute resource guides that can help caregivers rapidly find services when needed.
AARP VI assisted the VI Department of Human Service in bringing the concerns before the 31 st Legislature through the Mock Legislature in May 2015. From that process, Senator Kurt Vialet, Chair of the Committee on Health, Hospitals and Human Services, offered to sponsor the Virgin Islands version of the Care Act. “Our hope,” states Denyce Singleton, State Director of the AARP Virgin Islands Office, “is to reduce hospital re-admissions by providing Caregivers with all the information and training they need to make the transition from the hospital back home a successful one. By providing Caregivers with the training they need to confidently provide the follow-up home care, we hope to ensure a better outcome for the patient AND, to reduce the stress felt by an inexperienced caregiver.”
If you would like to help get the Care Act passed in the Virgin Islands, please call Senator Kurt Vialet’s Office at the 31 st Legislature at 340-774-0880. Ask him to introduce the CARE (Act) Bill on the floor of the Legislature. You can also ask your friends to call their favorite Senators and tell them to support the Care Act.
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[i] AARP Public Policy Institute, Pastore, Enzo, MSS, MLSP, Senior Legislative Representative/State Health and Family, AARP Government Affairs, July 27, 2015.
[iv] 2015 AARP Caregiving Survey: Family Caregivers
[v] 2015 AARP Caregiving Survey: Family Caregivers
[vi] 2015 AARP Caregiving Survey: Family Caregivers
[vii] 2015 AARP Caregiving Survey: Family Caregivers
[viii] 2015 AARP Caregiving Survey: Family Caregivers
[ix] 2015 AARP Caregiving Survey: Family Caregivers
[x] 2015 AARP Caregiving Survey: Family Caregivers
[xi] 2015 AARP Caregiving Survey: Working Family Caregivers
[xii] 2015 AARP Caregiving Survey: Working Family Caregivers
[xiii] 2015 AARP Caregiving Survey: Living Independently
[xiv] 2015 AARP Caregiving Survey: Living Independently
[xv] 2015 AARP Caregiving Survey: Respite Care
[xvi] 2015 AARP Caregiving Survey: Respite Care
[xvii] 2015 AARP Caregiving Survey: Respite Care
[xviii] 2015 AARP Caregiving Survey: The Caregiver Advise, Record, Enable (CARE) Act
[xix] 2015 AARP Caregiving Survey: The Caregiver Advise, Record, Enable (CARE) Act
[xx] 2015 AARP Caregiving Survey: The Caregiver Advise, Record, Enable (CARE) Act
[xxi] 2015 AARP Caregiving Survey: The Caregiver Advise, Record, Enable (CARE) Act
[xxii] 2015 AARP Caregiving Survey: The Caregiver Advise, Record, Enable (CARE) Act
[xxiii] 2015 AARP Caregiving Survey: Tax Credit for Family Caregivers
[xxiv] 2015 AARP Caregiving Survey: Tax Credit for Family Caregivers
[xxv] 2015 AARP Caregiving Survey: Tax Credit for Family Caregivers