Lightening the Load:
An Overview of Caregiver Burden in Dementia Care Home health clinicians frequently encounter patients with dementia living in the community. The plan of care is usually developed around the needs of the affected person, with focus on safety and quality of life. In caring for these individuals, the clinician is faced with an even greater task of supporting the caregiver and identifying caregiver fatigue and burden. Improving the competence and knowledge of caregivers is valuable in minimizing burden. Home care clinicians have the knowledge, skills, and resources to ease the burden of caregiving and prolong the time that the person with dementia can remain in the home. This article describes current research and approaches to care, specifically with problems involving behavior, functional limitations, and safety.
S
uccessful management of dementia in the community extends beyond the person who has been diagnosed with the condition. Management focuses around two key people: the patient with dementia and the caregiver. Maintaining the person with dementia at home means optimizing potential while minimizing the debilitation normally associated with a progressive neurological condition. The challenge and responsibility for this burden falls to the caregiver in community-based dementia care. The goal of maintaining and sustaining a healthy, successful caregiver is essential to achieve quality health outcomes for the community-dwelling patient with dementia. The purpose of this article is to provide an overview of evidence upon which reasoned practice strategies and decisions can be based to
address caregiver burden incurred in the management of a patient with dementia in the home.
The State of Dementia Care in the U.S. Population Dementia is a general term for a decline in mental ability that causes difficulties in carrying out normal activities. Alzheimer’s disease (AD), the most common type of dementia, is a condition characterized by progressive deterioration in memory, behavior, and thinking (Alzheimer’s Association, 2014a). Although no definitive cure for dementia has been found, preservation of cognition and memory while delaying continued loss of function has been the goal of caregiving. Hebert et al. (2013) estimated there are 4.7 million cases of AD in persons 65 years old
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and above. Of these, 0.7 million means caregiver burden tends are between the ages of 65 to 74, to grow over time. The demands Alzheimer’s disease (AD), 2.3 million between the ages of of caregiving often compromise the most common type of 75 to 84, and 1.8 million are 85 the financial stability of the dementia, is a condition years and older. It is projected family and place an additional that by 2050, these numbers will characterized by progressive burden on the caregiver. In 2013, almost triple. The benefits of the cost of care provided by deterioration in memory, medical and health innovation 15.5 million unpaid caregivers behavior, and thinking. are allowing us to manage diswas estimated to be valued at ease, which can delay death, but more than $220 billion (Alzheimwhich has resulted in increased er’s Association, 2014a). The numbers of the “old-old.” With this increased cost of healthcare for the caregivers is an addilongevity comes the risk of acquiring age-related tional $9.3 billion. It is clear that managing AD will health problems such as dementia. be financially challenging for the next 25 years. Cost of care has become an important issue as The National Alliance for Caregiving (NAC) the population of dementia patients grows and reported that it is usually a family member who economic conditions become more fragile. The acts as caregiver. Two out of three caregivers are complexity of care for patients with dementia women, with an average age of 51 years, and along with the progressive nature of the disease having been in the caregiving role for an average
April 2015
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imperative. Rockwood et al. (2013) found that the most Female caregivers have been common events that triggered found to experience more burden, the transfer from home to a poorer mental and physical health, nursing home or assisted living facility were illness, absence, or increased depressive symptoms, and death of a caregiver. Transfers decreased participation in health were necessitated by impaired promoting activities. instrumental activities of daily living (especially meal preparation), which was the single most common reason for a move to a nursing home of 4 years. The average total number of years of or assisted living. caring for a spouse with dementia is 8.7. Caregivers often suffer from worsening health and less time with family and friends (NAC, 2009). Behavior Problems Both men and women are faced with physical Another of the major reasons for patients with and emotional challenges when they undertake dementia to be transferred to an institution is caregiving a person with dementia. Female behavioral issues (Nichols et al., 2009). When the caregivers have been found to experience more caregiver feels unable to deal with the changing burden, poorer mental and physical health, behavioral issues of the care recipient, the only increased depressive symptoms, and decreased alternative is often institutionalization. These participation in health promoting activities behaviors include apathy, aggressiveness, depres(Gibbons et al., 2014). Men tend to use fewer sion, and restlessness (Aminzadeh et al., 2006; opportunities to seek and use social support Fauth & Gibbons, 2014). Sometimes these behavior strategies when compared with women caregivproblems occur in the late afternoon to early eveers (Baker et al. 2010). Ethnicity may also play a ning, a condition known as sundowning. Nowak role in caregiver responses. Whites have reported and Davis (2007) described sundowning as a group more depression symptoms than Blacks when of symptoms exhibiting physical aggression, resisstudied over 4 years (Skarupski et al., 2009). tance, and disconcerted vocalizations. Identifying The health of the caregiver may impact ability and treating unmet needs such as pain, constipaand confidence to manage the patient with tion, lack of sleep, and fatigue may help manage dementia. Medical conditions most frequently the behavior. Minimizing activities in the evening reported by caregivers included arthritis, back and providing nap times may also help. A consult problems, diabetes, heart conditions, high to an occupational therapist may be made for cholesterol hypertension, anxiety, and osteoporoassessment and utilization of interventions such as sis (Gibbons et al., 2014). Self-efficacy refers to aromatherapy, music therapy, and environmental one’s ability and confidence to achieve an outcome modification to minimize agitation (Padilla, 2011). or goal, and it is a good measure of a person’s current and future status. Caregivers who exhibit selfSafety Issues efficacy in symptom management tend to have less Caregivers show increasing concern about the burden and depression (Gallagher et al., 2011). safety of the person with dementia for whom they care (Lach & Chang, 2007; Samia et al. 2012). In these studies, modifying the home by using Evidence to Support baby monitors, alarms, and monitoring systems Caregiving Strategies were safety initiatives utilized by caregivers. Caregiver burden is the response of the caregiver to Some caregivers considered moving to a more the stresses of providing care. Caregivers are faced supportive living environment such as a smaller with physical, emotional, psychological, and finanhouse, an apartment, or assisted living. Caregivers cial burdens of caregiving (Asiret & Kapucu, 2012). need guidance on disease progression, monitorRazani et al. (2014) found that anxiety, depression, ing devices, and housing options to make and hostility of caregivers were significantly related informed decisions about equipment acquisition to the level of caregiver burden. Treatment of or relocation. depression and anxiety to support the caregiver is
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Wandering
Patients may engage in episodes of walking about without a goal or destination at any time during the night or day resulting in inadequate rest for the patient and caregiver, as well as presenting safety concerns. Houston et al. (2011) found that although information was available to prevent the patient with dementia from wandering, some caregivers had not adopted any of them. Most caregivers do not utilize an identification bracelet and have not made any physical alterations to their homes to prevent wandering. It is evident that some caregivers fail to recognize wandering as a problem, until the person with dementia gets lost. There is strong evidence indicating the need for a tracking system for patients who wander to benefit both patients and caregivers (Landau et al., 2009). Although tracking device technology is available, it has not been widely studied due to ethical implications of privacy and autonomy. Environmental changes to prevent exit-seeking behaviors have been identified in research but were mostly conducted in institutions. To prevent door-exiting behaviors, Kincaid and Peacock (2003) found this behavior was minimized by painting murals on exit doors. Further testing in the home setting is needed. Project Lifesaver International (Alzheimer’s Foundation of America, 2014) is a rapid response system that locates patients who wander through a radio technology connected to specially trained rescue and response teams. Persons who are enrolled wear a bracelet or an anklet that transmits signals within a mile radius from the ground and 5 miles from the air. When a person is missing, the caregiver notifies the Project Lifesaver International local county office, and an emergency response team is activated. The Safe Return Program (Alzheimer’s Association, 2014b) uses a network of local association chapters of the Alzheimer’s Association and law enforcement agencies to help locate missing people with dementia. The cost of enrolling in the Safe Return Program is $55, which includes the cost of the identification jewelry. It also includes a wallet card, a 24-hour response service, personal record, and a safe tips magnet. When the person is missing, an emergency response number can be notified to alert law enforcement agencies. The Silver Alert program (American Silver Alert Coalition, 2014) is another emergency response system, which integrates the use of
April 2015
media, traffic signs, radio and telephone stations, and law enforcement agencies to inform the public of missing elderly. Silver Alert also uses variable-message signs on roadways to alert motorists to be on the lookout for missing persons. The home care clinician is in a pivotal position to prevent the person with dementia from getting lost by encouraging early registration where technology is available. In a study by Rowe et al. (2012) most persons with dementia, who were lost, were found driving a car. Asking a person with dementia to stop driving may be a source of guilt and anxiety for caregivers. The decision to restrict the patient’s driving privileges should be made with the collaboration of family, healthcare providers, and law enforcement. The American Association of Retired Persons [AARP] (2014) has a publication available on its Web site about “10 Signs That It’s Time to Limit or Stop Driving.” The “We Need to Talk Program” available in the AARP Web site is an educational program to help the caregiver approach people with dementia about driving restrictions. Functional Challenges
Functional limitations of people with dementia and dependence on the caregiver for daily tasks have been correlated to burden (Abdollahpour et al., 2011; Razani et al., 2014). Problem behaviors and the demands of assisting with activities of daily living have been documented as the greatest cause of caregiver depression and anxiety (Pioli, 2010). Promoting optimal function of patients with dementia is the goal of intervention; however, due to disease progression, function may be limited. The caregiver then has to perform additional tasks for the care recipient. Improving mastery in performing caregiver tasks may help reduce the burden of caregiving. Referral to physical therapy services may help establish routine activity and an exercise program that maximizes functional skills. A 30-minute exercise program performed several times a week that includes walking may also have a positive impact on mood (Eggermont & Scherder, 2006) and may improve stability and decrease the potential for fall and injury. Falls
An intervention that may be used at home to prevent falls is an early warning device available in the market ranging from $100 to $200. The device
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the care required. Many caregivers express frustration The decision to restrict the patient’s about their lack of knowledge and inability to find resources driving privileges should be made when needed (Samia et al., with the collaboration of family, 2012). In a systematic review, healthcare providers, and law Thinnes and Padilla (2011) enforcement. proposed that caregivers and families be provided with information needed to understand the expected decline to precomes wired or wireless with a chair or bed pad pare them for making modifications in lifestyle and connected to an alarm on-site or in an adjacent activities. Meeting the educational needs of careroom. When the person attempts to get up, weight givers can improve their self-efficacy and decrease is lifted from the pad, which causes an alarm to feelings of depression and anxiety in their new role. sound. A variation of this alarm is available as a Caregivers identified the following topics as sensor with an infrared light. The device senses the most important for caregivers of people with obstruction to the light beam and sends off an dementia: combativeness, confusion, and comalarm when the person crosses the light beam munication (Nichols et al., 2009). Managing these while trying to get out of bed. There have been challenges should be the focus of teaching. The conflicting reports on the effectiveness of the alarm top three stress and coping topics identified by in institutional settings (Kosse et al., 2013) due to the caregivers were on healthy lifestyle, grief, increased number of false alarms and the nursing and relaxation. Caregivers recognized the necesstaff’s lack of response. However, a reduction in sity of maintaining their own health in order to be falls and fall-related injuries has resulted from the prepared for the job ahead of them. use of bed exit alarms. Falls can be averted with the use of these devices and may provide the caregiver Caregiver Need for Support the much-needed peace of mind. Caregiving requires a considerable amount of time. Most caregivers would like to obtain extra help from paid caregivers to attend to personal Communication Disruptions needs. Aminzadeh et al. (2006) identified a relaPeople with dementia often experience speech tionship between caregiver burden and provision deficits in the form of inability to name objects, inof assistance with personal tasks, dissatisfaction coherent conversations, and progressive deteriowith received help, and patient dysfunctional ration of communication (Egan et al., 2010) and behavior. Although the authors predicted that may eventually cease speaking due to the frustraeducation and management strategies would tion of not being understood. This leads to further improve caregiver quality of life, caregivers felt distress, depression, and anxieties in both care that their greatest need was for relief from hours recipient and caregiver. Effective strategies of of caregiving. More hours in respite care were communication need to be learned and utilized by needed to improve quality of life. Support services the caregiver to meet the needs of people with should be individualized depending on the needs dementia. Mason-Baughman and Lander (2012) of the care recipient, the social support available trained caregivers on 11 techniques in communicato the caregiver, and the overall physical and emotion. At the end of the study, they found that elimitional health of both. The role of the social worker nating distractions and utilization of picture books in identifying groups that provide intervention were most helpful to the caregivers. The training and advocacy is vital to improve caregiver knowlsession positively affected the caregiver’s knowledge and decrease caregiver burden (Pinson et al., edge and willingness to implement the methods. 2010). Promoting support groups in existing organizational settings, such as faith-based settings, Education of Caregivers provides an avenue for identifying caregivers who Most caregivers entering into the role of providing otherwise may not seek help. With most of the care to a person with dementia have little or no caregivers being elderly spouses, referral to a formal preparation or in-depth understanding of
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social worker may aid in the use of community support services. The use of palliative services toward the endof-life is inevitable as the health of the person with dementia deteriorates. Emotional support and management of pain and other end-of-life symptoms are valuable services offered. Constant communication, emotional support, and a trusting relationship with the hospice team is vital in assisting caregivers in making end-of-life choices for the patients with dementia, such as artificial feeding, hospitalizations, and other treatment options (Davies et al., 2014).
Positive Caregiving: Finding Meaning Positive effects of caregiving through finding meaning and developing a closer relationship with the care recipient have been reported (Shim et al., 2013). Finding meaning for caregivers is a matter of choice and requires acceptance of the changes in both the caregiver and the person with dementia (Shim et al., 2012). Quinn et al. (2012) concluded that lessening the feelings of feeling “trapped” is predictive of higher meaning on the part of caregivers. Respite care, through substitute family caregivers and adult day care utilization can help minimize these feelings. The relationships between spouses before the onset of dementia have also been documented in the literature as a determinant of how much caregiver burden is experienced and how the problematic behaviors of the care recipient are perceived (Shim et al., 2012). A spousal caregiver who has had a negative relationship with the person with dementia before illness will often experience greater burden than the caregiver who has had a positive relationship. Promoting positive relationship strategies such as negotiation, empathy, and compassion and minimizing negative relationships such as confrontation, ignoring, or criticism can lessen feelings of burden (Shim et al., 2012).
Further Research Needs Caregiving is complex and requires interplay between the care recipient and the caregiver, the extended family, various healthcare providers, and the community. Each one plays a different role with one common goal, to provide the best possible care and keep the person with dementia at home without sacrificing the quality of life of the caregiver. Multiple interventions have been enumerated, most of which improve the care recipient’s quality of life but not necessarily the caregiver’s.
April 2015
Further research should focus on the best way to find safe alternatives for daily care available to working persons responsible for the care of dementia patients as well as respite care for full-time caregivers. Most sources agree that home-based care is the most effective, humane, and cost-effective way to provide dementia care. Research is needed to define, describe, and design optimal care alternatives to ease caregiver burden and optimize health outcomes. In the area of communication, training of caregivers was found to improve the quality of life of community-dwelling people with dementia. However, there is insufficient evidence that it decreases challenging behaviors of the care recipient and, thus, perceived caregiving burden. Research should be directed to the use of meaningful communication to handle difficult situations such as aggression and restlessness. Caring for persons with dementia is a challenge, which forces many unexpected actions and decisions upon a person who is usually unprepared for the experience. Caregivers are in communities doing their best to provide a safe and loving environment for people with dementia while maintaining health, sanity, and an optimal quality of life for both the caregiver and the care receiver. Home care clinicians are often on the front lines of identifying caregiver fatigue and burden and have the knowledge, skills, and resources that can ease the burden and prolong the time that the person with dementia can remain in the home. It is vital for home care clinicians to be knowledgeable about the resources for patients with dementia and their caregivers as we plan for the growing numbers of elderly, many of whom will be on one end or the other of the dementia caregiving spectrum. Maria Victoria Villapando, MS, RN, CNS, is a PhD Student, University of Texas at Tyler, Tyler Texas. The author and planners have disclosed no potential conflicts of interest, financial or otherwise. Address for correspondence: Victoria Villapando, 1201 High Grove, Garland Texas 75041 ([email protected]). DOI:10.1097/NHH.0000000000000223
REFERENCES Abdollahpour, I., Noroozian, M., Nedjat, S., & Majdzadeh, R. (2011). Caregiver burden and its determinants among the family members of patients with dementia in Iran. International Journal of Preventive Medicine, 3(8), 544-551. Alzheimer’s Association. (2014a). Alzheimer’s facts and figures. Retrieved from http://www.alz.org/alzheimers_disease_facts_ and_figures.asp.
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Alzheimer’s Association. (2014b) MedicAlert: Alzheimer’s association safe return. Retrieved from http://www.alz.org/care/dementiamedic-alert-safe-return.asp#cost. Alzheimer’s Foundation of America. (2014). Project LifeSaver International. Retrieved from http://www.alzfdn.org/ StrategicPartners/projectlifesaver.html. American Association of Retired Persons. (2014). Online seminar: talking with older driver. Retrieved from http://www.aarp.org/ home-garden/transportation/we_need_to_talk/. American Silver Alert Coalition. (2014). What is SilverAlert? Retrieved from http://silveralertbill.com/. Aminzadeh, F., Byszewski, A., & Dalziel, W. B. (2006). A prospective study of caregiver burden in an outpatient comprehensive geriatric assessment program. Clinical Gerontologist, 29(4), 47-60. Asiret, G. D., & Kapucu, S. (2012). Burden of caregivers of stroke patients. Turkish Journal of Neurology, 19(1), 5-10. doi:10.4274/ Tnd.60234 Baker, K. L., Robertson, N., & Connelly, D. (2010). Men caring for wives or partners with dementia: Masculinity, strain and gain. Aging and Mental Health, 14(3), 319-327. doi:10.1080/13607860903228788 Davies, N., Maio, L., Rait, G., & Iliffe, S. (2014). Quality end-of-life care for dementia: What have family carers told us so far? A narrative synthesis. Palliative Medicine, 28(7), 919-930. doi:10.1177/02692/63/4526766 Egan, M., Bérubé, D., Racine, G., Leonard, C., & Rochon, E., (2010). Methods to enhance verbal communication between Individuals with Alzheimer’s disease and their formal and informal caregivers: A systematic review. International Journal of Alzheimer’s Disease, 2010, 2010. doi:10.4061/2010/906818. Eggermont, L. H. P., & Scherder, E. J. A. (2006). Physical activity and behavior in dementia. Dementia, 5(3), 411-428. doi:10.1177/1471301206067115 Fauth, E. B., & Gibbons, A. (2014). Which behavioral and psychological symptoms of dementia are the most problematic? Variability by prevalence, intensity, distress ratings, and associations with caregiver depressive symptoms. Geriatric Psychiatry, 29, 263-271. Gallagher, D., Ni Mhaolain, A., Crosby, L., Ryan, D., Lacey, L., Coen, R. F., …, Lawlor, B. A. (2011). Self-efficacy for managing dementia may protect against burden and depression in Alzheimer’s caregivers. Aging & Mental Health, 15(6), 663-670. doi:10.1080/ 13607863.2011.562179 Gibbons, C., Creese, J., Tran, M., Brazil, K., Chambers, L., Weaver, B., & Bédard, M. (2014). The psychological and health consequences of caring for a spouse with dementia: A critical comparison of husbands and wives. Journal of Women and Aging, 26(1), 3-21. doi:10.1080/08952841.2014.854571 Hebert, L. E., Weuve, J., Scherr, P. A., & Evans, D. A. (2013). Alzheimer disease in the United States (2010-2050) estimated using the 2010 census. Neurology, 80(19), 1778-1783. Houston, A. M., Brown, L. M., Rowe, M. A., Barnett, S. D. (2011). The informal caregivers’ perception of wandering. American Journal of Alzheimer’s Disease & Other Dementias, 26(8), 616-622. Kincaid, C., & Peacock, J. R. (2003). The effect of a wall mural on decreasing four types of door-testing behaviors. Journal of Applied Gerontology, 22, 76-88. doi:10.1177/0733464802250046 Kosse, N. M., Brands, K., Bauer, J. M., Hortobagyi, T., & Lamoth, C. J. (2013). Sensor technologies aiming at fall prevention in institutionalized old adults: A synthesis of current knowledge. Internationl Journal of Medical Infomatics, 82(29), 743-752. doi:10.1016/j.ijmedinf Lach, H. W., & Chang, Y. P. (2007). Caregiver perspectives on safety in home dementia care. Western Journal of Nursing Research, 29(8), 993-1014. doi:10.1177/0193945907303098 Landau, R., Werner, S., Auslander, G. K., Shoval, N., & Heinik, J. (2009). Attitudes of family and professional care-givers towards
the use of GPS for tracking patients with dementia: An exploratory study. British Journal of Social Work, 39, 670-692. doi:10.1093/bjsw/bcp037 Mason-Baughman, M. B., & Lander, A. (2012). Communication strategy training for caregivers of individuals with dementia. Perspectives on Gerontology, 17(3), 76-83. doi:10.1044/ gero17.3.78 National Alliance for Caregiving. (2009). Alzheimer’s disease caregiving in the United States. Retrieved from http://www.caregiving. org/wp-content/uploads/2012/06/Alzheimers-Report-2010FINAL.pdf. Nichols, L., Martindale-Adams, J., Greene, W. A., Burns, R., Graney, M. J., & Lummus, A. (2009). Dementia caregivers’ most pressing concerns. Clinical Gerontologist, 32, 1-14. doi:10.1080/ 07317110802468546 Nowak, L., & Davis, J. E. (2007). A qualitative examination of the phenomenon of sundowning. Journal of Nursing Scholarship, 39(3), 256-258. Padilla, R. (2011). Effectiveness of environment-based interventions for people with Alzheimer’s disease and related dementias. American Journal of Occupational Therapy, 65(5), 514-522. Pinson, S., Register, K., & Roberts-Lewis, A. (2010). Aging, memory loss, dementia and Alzheimer’s disease: The role of Christian social worker and the church. Social Work and Christianity, 37(2), 188-203. Pioli, M. F. (2010). Global and caregiving mastery as moderators in the caregiving stress process. Aging & Mental Health, 14(5), 603-612. doi:10.1080/13607860903586193 Quinn, C., Clare, L., & Woods, R. T. (2012). What predicts whether caregivers of people with dementia find meaning in their role? International Journal of Geriatric Psychiatry, 27(11), 1195-1202. doi:10.1002/gps.3773 Razani, J., Corona, R., Quilici, J., Matevosyan, A. A., Funes, C., Larco, A., …, Lu, P. (2014). The effects of declining functional abilities in dementia patients and increases psychological distress on caregiver burden over a one-year period. Clinical Gerontologist, 37(3), 235-252. doi:10.1080/07317115.2 014.885920 Rockwood, J. K. H., Richard, M., Garden, K., Hominick, K., Mitnitski, A., & Rockwood, K., (2013). Precipitating and predisposing events and symptoms for admission to assisted living or nursing home care. Canadian Geriatrics Journal, 17(1), 16-21. doi:10.5770/cgj.17.93 Rowe, M. A., Greenblum, C. A., Boltz, M., & Galvin, J. E. (2012). Missing drivers with dementia: Antecedents and recovery. Journal of American Geriatric Society, 60(11), 2063-2069. doi:10.1111/j.1532-5415.2012.04159.x Samia, L.W., Hepburn, K., & Nichols, L. (2012). “Flying by the seat of our pants”: What dementia family caregivers want in an advanced caregiver training program. Research in Nursing and Health, 35(6), 598-609. doi:10.1002/nur.21504 Shim, B., Barroso, J., & Davis, L. L. (2012). A comparative qualitative analysis of stories of spousal caregivers of people with dementia: Negative, ambivalent, and positive experiences. International Journal of Nursing Studies, 49(2), 220-229. doi:10.1016/j. ijnurstu.2011.09.003 Shim, B., Barroso, J., Gilliss, C. L., & Davis, L. L. (2013). Finding meaning in caring for a spouse with dementia. Applied Nursing Research, 26(3), 121-126. doi:10.1016/j.apnr.2013.05.001 Skarupski, K. A., McCann, J. J., Bienias, J. L., & Evans, D. A. (2009). Race differences in emotional adaptation of family caregivers. Aging and Mental Health, 13(5), 715-724. doi:10.1080/13607860902845582 Thinnes, A., & Padilla, R. (2011). Effect of educational and supportive strategies on the ability of caregivers of people with dementia to maintain participation in that role. American Journal of Occupational Therapy, 65(5), 541-549. doi:10.5014/ ajot.2011.002634
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An Overview of Caregiver Burden in Dementia Care Home health clinicians frequently encounter patients with dementia living in the community. The plan of care is usually developed around the needs of the affected person, with focus on safety and quality of life. In caring for these individuals, the clinician is faced with an even greater task of supporting the caregiver and identifying caregiver fatigue and burden. Improving the competence and knowledge of caregivers is valuable in minimizing burden. Home care clinicians have the knowledge, skills, and resources to ease the burden of caregiving and prolong the time that the person with dementia can remain in the home. This article describes current research and approaches to care, specifically with problems involving behavior, functional limitations, and safety.
S
uccessful management of dementia in the community extends beyond the person who has been diagnosed with the condition. Management focuses around two key people: the patient with dementia and the caregiver. Maintaining the person with dementia at home means optimizing potential while minimizing the debilitation normally associated with a progressive neurological condition. The challenge and responsibility for this burden falls to the caregiver in community-based dementia care. The goal of maintaining and sustaining a healthy, successful caregiver is essential to achieve quality health outcomes for the community-dwelling patient with dementia. The purpose of this article is to provide an overview of evidence upon which reasoned practice strategies and decisions can be based to
address caregiver burden incurred in the management of a patient with dementia in the home.
The State of Dementia Care in the U.S. Population Dementia is a general term for a decline in mental ability that causes difficulties in carrying out normal activities. Alzheimer’s disease (AD), the most common type of dementia, is a condition characterized by progressive deterioration in memory, behavior, and thinking (Alzheimer’s Association, 2014a). Although no definitive cure for dementia has been found, preservation of cognition and memory while delaying continued loss of function has been the goal of caregiving. Hebert et al. (2013) estimated there are 4.7 million cases of AD in persons 65 years old
Maria Victoria Villapando, MS, RN, CNS
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and above. Of these, 0.7 million means caregiver burden tends are between the ages of 65 to 74, to grow over time. The demands Alzheimer’s disease (AD), 2.3 million between the ages of of caregiving often compromise the most common type of 75 to 84, and 1.8 million are 85 the financial stability of the dementia, is a condition years and older. It is projected family and place an additional that by 2050, these numbers will characterized by progressive burden on the caregiver. In 2013, almost triple. The benefits of the cost of care provided by deterioration in memory, medical and health innovation 15.5 million unpaid caregivers behavior, and thinking. are allowing us to manage diswas estimated to be valued at ease, which can delay death, but more than $220 billion (Alzheimwhich has resulted in increased er’s Association, 2014a). The numbers of the “old-old.” With this increased cost of healthcare for the caregivers is an addilongevity comes the risk of acquiring age-related tional $9.3 billion. It is clear that managing AD will health problems such as dementia. be financially challenging for the next 25 years. Cost of care has become an important issue as The National Alliance for Caregiving (NAC) the population of dementia patients grows and reported that it is usually a family member who economic conditions become more fragile. The acts as caregiver. Two out of three caregivers are complexity of care for patients with dementia women, with an average age of 51 years, and along with the progressive nature of the disease having been in the caregiving role for an average
April 2015
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imperative. Rockwood et al. (2013) found that the most Female caregivers have been common events that triggered found to experience more burden, the transfer from home to a poorer mental and physical health, nursing home or assisted living facility were illness, absence, or increased depressive symptoms, and death of a caregiver. Transfers decreased participation in health were necessitated by impaired promoting activities. instrumental activities of daily living (especially meal preparation), which was the single most common reason for a move to a nursing home of 4 years. The average total number of years of or assisted living. caring for a spouse with dementia is 8.7. Caregivers often suffer from worsening health and less time with family and friends (NAC, 2009). Behavior Problems Both men and women are faced with physical Another of the major reasons for patients with and emotional challenges when they undertake dementia to be transferred to an institution is caregiving a person with dementia. Female behavioral issues (Nichols et al., 2009). When the caregivers have been found to experience more caregiver feels unable to deal with the changing burden, poorer mental and physical health, behavioral issues of the care recipient, the only increased depressive symptoms, and decreased alternative is often institutionalization. These participation in health promoting activities behaviors include apathy, aggressiveness, depres(Gibbons et al., 2014). Men tend to use fewer sion, and restlessness (Aminzadeh et al., 2006; opportunities to seek and use social support Fauth & Gibbons, 2014). Sometimes these behavior strategies when compared with women caregivproblems occur in the late afternoon to early eveers (Baker et al. 2010). Ethnicity may also play a ning, a condition known as sundowning. Nowak role in caregiver responses. Whites have reported and Davis (2007) described sundowning as a group more depression symptoms than Blacks when of symptoms exhibiting physical aggression, resisstudied over 4 years (Skarupski et al., 2009). tance, and disconcerted vocalizations. Identifying The health of the caregiver may impact ability and treating unmet needs such as pain, constipaand confidence to manage the patient with tion, lack of sleep, and fatigue may help manage dementia. Medical conditions most frequently the behavior. Minimizing activities in the evening reported by caregivers included arthritis, back and providing nap times may also help. A consult problems, diabetes, heart conditions, high to an occupational therapist may be made for cholesterol hypertension, anxiety, and osteoporoassessment and utilization of interventions such as sis (Gibbons et al., 2014). Self-efficacy refers to aromatherapy, music therapy, and environmental one’s ability and confidence to achieve an outcome modification to minimize agitation (Padilla, 2011). or goal, and it is a good measure of a person’s current and future status. Caregivers who exhibit selfSafety Issues efficacy in symptom management tend to have less Caregivers show increasing concern about the burden and depression (Gallagher et al., 2011). safety of the person with dementia for whom they care (Lach & Chang, 2007; Samia et al. 2012). In these studies, modifying the home by using Evidence to Support baby monitors, alarms, and monitoring systems Caregiving Strategies were safety initiatives utilized by caregivers. Caregiver burden is the response of the caregiver to Some caregivers considered moving to a more the stresses of providing care. Caregivers are faced supportive living environment such as a smaller with physical, emotional, psychological, and finanhouse, an apartment, or assisted living. Caregivers cial burdens of caregiving (Asiret & Kapucu, 2012). need guidance on disease progression, monitorRazani et al. (2014) found that anxiety, depression, ing devices, and housing options to make and hostility of caregivers were significantly related informed decisions about equipment acquisition to the level of caregiver burden. Treatment of or relocation. depression and anxiety to support the caregiver is
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Wandering
Patients may engage in episodes of walking about without a goal or destination at any time during the night or day resulting in inadequate rest for the patient and caregiver, as well as presenting safety concerns. Houston et al. (2011) found that although information was available to prevent the patient with dementia from wandering, some caregivers had not adopted any of them. Most caregivers do not utilize an identification bracelet and have not made any physical alterations to their homes to prevent wandering. It is evident that some caregivers fail to recognize wandering as a problem, until the person with dementia gets lost. There is strong evidence indicating the need for a tracking system for patients who wander to benefit both patients and caregivers (Landau et al., 2009). Although tracking device technology is available, it has not been widely studied due to ethical implications of privacy and autonomy. Environmental changes to prevent exit-seeking behaviors have been identified in research but were mostly conducted in institutions. To prevent door-exiting behaviors, Kincaid and Peacock (2003) found this behavior was minimized by painting murals on exit doors. Further testing in the home setting is needed. Project Lifesaver International (Alzheimer’s Foundation of America, 2014) is a rapid response system that locates patients who wander through a radio technology connected to specially trained rescue and response teams. Persons who are enrolled wear a bracelet or an anklet that transmits signals within a mile radius from the ground and 5 miles from the air. When a person is missing, the caregiver notifies the Project Lifesaver International local county office, and an emergency response team is activated. The Safe Return Program (Alzheimer’s Association, 2014b) uses a network of local association chapters of the Alzheimer’s Association and law enforcement agencies to help locate missing people with dementia. The cost of enrolling in the Safe Return Program is $55, which includes the cost of the identification jewelry. It also includes a wallet card, a 24-hour response service, personal record, and a safe tips magnet. When the person is missing, an emergency response number can be notified to alert law enforcement agencies. The Silver Alert program (American Silver Alert Coalition, 2014) is another emergency response system, which integrates the use of
April 2015
media, traffic signs, radio and telephone stations, and law enforcement agencies to inform the public of missing elderly. Silver Alert also uses variable-message signs on roadways to alert motorists to be on the lookout for missing persons. The home care clinician is in a pivotal position to prevent the person with dementia from getting lost by encouraging early registration where technology is available. In a study by Rowe et al. (2012) most persons with dementia, who were lost, were found driving a car. Asking a person with dementia to stop driving may be a source of guilt and anxiety for caregivers. The decision to restrict the patient’s driving privileges should be made with the collaboration of family, healthcare providers, and law enforcement. The American Association of Retired Persons [AARP] (2014) has a publication available on its Web site about “10 Signs That It’s Time to Limit or Stop Driving.” The “We Need to Talk Program” available in the AARP Web site is an educational program to help the caregiver approach people with dementia about driving restrictions. Functional Challenges
Functional limitations of people with dementia and dependence on the caregiver for daily tasks have been correlated to burden (Abdollahpour et al., 2011; Razani et al., 2014). Problem behaviors and the demands of assisting with activities of daily living have been documented as the greatest cause of caregiver depression and anxiety (Pioli, 2010). Promoting optimal function of patients with dementia is the goal of intervention; however, due to disease progression, function may be limited. The caregiver then has to perform additional tasks for the care recipient. Improving mastery in performing caregiver tasks may help reduce the burden of caregiving. Referral to physical therapy services may help establish routine activity and an exercise program that maximizes functional skills. A 30-minute exercise program performed several times a week that includes walking may also have a positive impact on mood (Eggermont & Scherder, 2006) and may improve stability and decrease the potential for fall and injury. Falls
An intervention that may be used at home to prevent falls is an early warning device available in the market ranging from $100 to $200. The device
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the care required. Many caregivers express frustration The decision to restrict the patient’s about their lack of knowledge and inability to find resources driving privileges should be made when needed (Samia et al., with the collaboration of family, 2012). In a systematic review, healthcare providers, and law Thinnes and Padilla (2011) enforcement. proposed that caregivers and families be provided with information needed to understand the expected decline to precomes wired or wireless with a chair or bed pad pare them for making modifications in lifestyle and connected to an alarm on-site or in an adjacent activities. Meeting the educational needs of careroom. When the person attempts to get up, weight givers can improve their self-efficacy and decrease is lifted from the pad, which causes an alarm to feelings of depression and anxiety in their new role. sound. A variation of this alarm is available as a Caregivers identified the following topics as sensor with an infrared light. The device senses the most important for caregivers of people with obstruction to the light beam and sends off an dementia: combativeness, confusion, and comalarm when the person crosses the light beam munication (Nichols et al., 2009). Managing these while trying to get out of bed. There have been challenges should be the focus of teaching. The conflicting reports on the effectiveness of the alarm top three stress and coping topics identified by in institutional settings (Kosse et al., 2013) due to the caregivers were on healthy lifestyle, grief, increased number of false alarms and the nursing and relaxation. Caregivers recognized the necesstaff’s lack of response. However, a reduction in sity of maintaining their own health in order to be falls and fall-related injuries has resulted from the prepared for the job ahead of them. use of bed exit alarms. Falls can be averted with the use of these devices and may provide the caregiver Caregiver Need for Support the much-needed peace of mind. Caregiving requires a considerable amount of time. Most caregivers would like to obtain extra help from paid caregivers to attend to personal Communication Disruptions needs. Aminzadeh et al. (2006) identified a relaPeople with dementia often experience speech tionship between caregiver burden and provision deficits in the form of inability to name objects, inof assistance with personal tasks, dissatisfaction coherent conversations, and progressive deteriowith received help, and patient dysfunctional ration of communication (Egan et al., 2010) and behavior. Although the authors predicted that may eventually cease speaking due to the frustraeducation and management strategies would tion of not being understood. This leads to further improve caregiver quality of life, caregivers felt distress, depression, and anxieties in both care that their greatest need was for relief from hours recipient and caregiver. Effective strategies of of caregiving. More hours in respite care were communication need to be learned and utilized by needed to improve quality of life. Support services the caregiver to meet the needs of people with should be individualized depending on the needs dementia. Mason-Baughman and Lander (2012) of the care recipient, the social support available trained caregivers on 11 techniques in communicato the caregiver, and the overall physical and emotion. At the end of the study, they found that elimitional health of both. The role of the social worker nating distractions and utilization of picture books in identifying groups that provide intervention were most helpful to the caregivers. The training and advocacy is vital to improve caregiver knowlsession positively affected the caregiver’s knowledge and decrease caregiver burden (Pinson et al., edge and willingness to implement the methods. 2010). Promoting support groups in existing organizational settings, such as faith-based settings, Education of Caregivers provides an avenue for identifying caregivers who Most caregivers entering into the role of providing otherwise may not seek help. With most of the care to a person with dementia have little or no caregivers being elderly spouses, referral to a formal preparation or in-depth understanding of
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social worker may aid in the use of community support services. The use of palliative services toward the endof-life is inevitable as the health of the person with dementia deteriorates. Emotional support and management of pain and other end-of-life symptoms are valuable services offered. Constant communication, emotional support, and a trusting relationship with the hospice team is vital in assisting caregivers in making end-of-life choices for the patients with dementia, such as artificial feeding, hospitalizations, and other treatment options (Davies et al., 2014).
Positive Caregiving: Finding Meaning Positive effects of caregiving through finding meaning and developing a closer relationship with the care recipient have been reported (Shim et al., 2013). Finding meaning for caregivers is a matter of choice and requires acceptance of the changes in both the caregiver and the person with dementia (Shim et al., 2012). Quinn et al. (2012) concluded that lessening the feelings of feeling “trapped” is predictive of higher meaning on the part of caregivers. Respite care, through substitute family caregivers and adult day care utilization can help minimize these feelings. The relationships between spouses before the onset of dementia have also been documented in the literature as a determinant of how much caregiver burden is experienced and how the problematic behaviors of the care recipient are perceived (Shim et al., 2012). A spousal caregiver who has had a negative relationship with the person with dementia before illness will often experience greater burden than the caregiver who has had a positive relationship. Promoting positive relationship strategies such as negotiation, empathy, and compassion and minimizing negative relationships such as confrontation, ignoring, or criticism can lessen feelings of burden (Shim et al., 2012).
Further Research Needs Caregiving is complex and requires interplay between the care recipient and the caregiver, the extended family, various healthcare providers, and the community. Each one plays a different role with one common goal, to provide the best possible care and keep the person with dementia at home without sacrificing the quality of life of the caregiver. Multiple interventions have been enumerated, most of which improve the care recipient’s quality of life but not necessarily the caregiver’s.
April 2015
Further research should focus on the best way to find safe alternatives for daily care available to working persons responsible for the care of dementia patients as well as respite care for full-time caregivers. Most sources agree that home-based care is the most effective, humane, and cost-effective way to provide dementia care. Research is needed to define, describe, and design optimal care alternatives to ease caregiver burden and optimize health outcomes. In the area of communication, training of caregivers was found to improve the quality of life of community-dwelling people with dementia. However, there is insufficient evidence that it decreases challenging behaviors of the care recipient and, thus, perceived caregiving burden. Research should be directed to the use of meaningful communication to handle difficult situations such as aggression and restlessness. Caring for persons with dementia is a challenge, which forces many unexpected actions and decisions upon a person who is usually unprepared for the experience. Caregivers are in communities doing their best to provide a safe and loving environment for people with dementia while maintaining health, sanity, and an optimal quality of life for both the caregiver and the care receiver. Home care clinicians are often on the front lines of identifying caregiver fatigue and burden and have the knowledge, skills, and resources that can ease the burden and prolong the time that the person with dementia can remain in the home. It is vital for home care clinicians to be knowledgeable about the resources for patients with dementia and their caregivers as we plan for the growing numbers of elderly, many of whom will be on one end or the other of the dementia caregiving spectrum. Maria Victoria Villapando, MS, RN, CNS, is a PhD Student, University of Texas at Tyler, Tyler Texas. The author and planners have disclosed no potential conflicts of interest, financial or otherwise. Address for correspondence: Victoria Villapando, 1201 High Grove, Garland Texas 75041 ([email protected]). DOI:10.1097/NHH.0000000000000223
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Alzheimer’s Association. (2014b) MedicAlert: Alzheimer’s association safe return. Retrieved from http://www.alz.org/care/dementiamedic-alert-safe-return.asp#cost. Alzheimer’s Foundation of America. (2014). Project LifeSaver International. Retrieved from http://www.alzfdn.org/ StrategicPartners/projectlifesaver.html. American Association of Retired Persons. (2014). Online seminar: talking with older driver. Retrieved from http://www.aarp.org/ home-garden/transportation/we_need_to_talk/. American Silver Alert Coalition. (2014). What is SilverAlert? Retrieved from http://silveralertbill.com/. Aminzadeh, F., Byszewski, A., & Dalziel, W. B. (2006). A prospective study of caregiver burden in an outpatient comprehensive geriatric assessment program. Clinical Gerontologist, 29(4), 47-60. Asiret, G. D., & Kapucu, S. (2012). Burden of caregivers of stroke patients. Turkish Journal of Neurology, 19(1), 5-10. doi:10.4274/ Tnd.60234 Baker, K. L., Robertson, N., & Connelly, D. (2010). Men caring for wives or partners with dementia: Masculinity, strain and gain. Aging and Mental Health, 14(3), 319-327. doi:10.1080/13607860903228788 Davies, N., Maio, L., Rait, G., & Iliffe, S. (2014). Quality end-of-life care for dementia: What have family carers told us so far? A narrative synthesis. Palliative Medicine, 28(7), 919-930. doi:10.1177/02692/63/4526766 Egan, M., Bérubé, D., Racine, G., Leonard, C., & Rochon, E., (2010). Methods to enhance verbal communication between Individuals with Alzheimer’s disease and their formal and informal caregivers: A systematic review. International Journal of Alzheimer’s Disease, 2010, 2010. doi:10.4061/2010/906818. Eggermont, L. H. P., & Scherder, E. J. A. (2006). Physical activity and behavior in dementia. Dementia, 5(3), 411-428. doi:10.1177/1471301206067115 Fauth, E. B., & Gibbons, A. (2014). Which behavioral and psychological symptoms of dementia are the most problematic? Variability by prevalence, intensity, distress ratings, and associations with caregiver depressive symptoms. Geriatric Psychiatry, 29, 263-271. Gallagher, D., Ni Mhaolain, A., Crosby, L., Ryan, D., Lacey, L., Coen, R. F., …, Lawlor, B. A. (2011). Self-efficacy for managing dementia may protect against burden and depression in Alzheimer’s caregivers. Aging & Mental Health, 15(6), 663-670. doi:10.1080/ 13607863.2011.562179 Gibbons, C., Creese, J., Tran, M., Brazil, K., Chambers, L., Weaver, B., & Bédard, M. (2014). The psychological and health consequences of caring for a spouse with dementia: A critical comparison of husbands and wives. Journal of Women and Aging, 26(1), 3-21. doi:10.1080/08952841.2014.854571 Hebert, L. E., Weuve, J., Scherr, P. A., & Evans, D. A. (2013). Alzheimer disease in the United States (2010-2050) estimated using the 2010 census. Neurology, 80(19), 1778-1783. Houston, A. M., Brown, L. M., Rowe, M. A., Barnett, S. D. (2011). The informal caregivers’ perception of wandering. American Journal of Alzheimer’s Disease & Other Dementias, 26(8), 616-622. Kincaid, C., & Peacock, J. R. (2003). The effect of a wall mural on decreasing four types of door-testing behaviors. Journal of Applied Gerontology, 22, 76-88. doi:10.1177/0733464802250046 Kosse, N. M., Brands, K., Bauer, J. M., Hortobagyi, T., & Lamoth, C. J. (2013). Sensor technologies aiming at fall prevention in institutionalized old adults: A synthesis of current knowledge. Internationl Journal of Medical Infomatics, 82(29), 743-752. doi:10.1016/j.ijmedinf Lach, H. W., & Chang, Y. P. (2007). Caregiver perspectives on safety in home dementia care. Western Journal of Nursing Research, 29(8), 993-1014. doi:10.1177/0193945907303098 Landau, R., Werner, S., Auslander, G. K., Shoval, N., & Heinik, J. (2009). Attitudes of family and professional care-givers towards
the use of GPS for tracking patients with dementia: An exploratory study. British Journal of Social Work, 39, 670-692. doi:10.1093/bjsw/bcp037 Mason-Baughman, M. B., & Lander, A. (2012). Communication strategy training for caregivers of individuals with dementia. Perspectives on Gerontology, 17(3), 76-83. doi:10.1044/ gero17.3.78 National Alliance for Caregiving. (2009). Alzheimer’s disease caregiving in the United States. Retrieved from http://www.caregiving. org/wp-content/uploads/2012/06/Alzheimers-Report-2010FINAL.pdf. Nichols, L., Martindale-Adams, J., Greene, W. A., Burns, R., Graney, M. J., & Lummus, A. (2009). Dementia caregivers’ most pressing concerns. Clinical Gerontologist, 32, 1-14. doi:10.1080/ 07317110802468546 Nowak, L., & Davis, J. E. (2007). A qualitative examination of the phenomenon of sundowning. Journal of Nursing Scholarship, 39(3), 256-258. Padilla, R. (2011). Effectiveness of environment-based interventions for people with Alzheimer’s disease and related dementias. American Journal of Occupational Therapy, 65(5), 514-522. Pinson, S., Register, K., & Roberts-Lewis, A. (2010). Aging, memory loss, dementia and Alzheimer’s disease: The role of Christian social worker and the church. Social Work and Christianity, 37(2), 188-203. Pioli, M. F. (2010). Global and caregiving mastery as moderators in the caregiving stress process. Aging & Mental Health, 14(5), 603-612. doi:10.1080/13607860903586193 Quinn, C., Clare, L., & Woods, R. T. (2012). What predicts whether caregivers of people with dementia find meaning in their role? International Journal of Geriatric Psychiatry, 27(11), 1195-1202. doi:10.1002/gps.3773 Razani, J., Corona, R., Quilici, J., Matevosyan, A. A., Funes, C., Larco, A., …, Lu, P. (2014). The effects of declining functional abilities in dementia patients and increases psychological distress on caregiver burden over a one-year period. Clinical Gerontologist, 37(3), 235-252. doi:10.1080/07317115.2 014.885920 Rockwood, J. K. H., Richard, M., Garden, K., Hominick, K., Mitnitski, A., & Rockwood, K., (2013). Precipitating and predisposing events and symptoms for admission to assisted living or nursing home care. Canadian Geriatrics Journal, 17(1), 16-21. doi:10.5770/cgj.17.93 Rowe, M. A., Greenblum, C. A., Boltz, M., & Galvin, J. E. (2012). Missing drivers with dementia: Antecedents and recovery. Journal of American Geriatric Society, 60(11), 2063-2069. doi:10.1111/j.1532-5415.2012.04159.x Samia, L.W., Hepburn, K., & Nichols, L. (2012). “Flying by the seat of our pants”: What dementia family caregivers want in an advanced caregiver training program. Research in Nursing and Health, 35(6), 598-609. doi:10.1002/nur.21504 Shim, B., Barroso, J., & Davis, L. L. (2012). A comparative qualitative analysis of stories of spousal caregivers of people with dementia: Negative, ambivalent, and positive experiences. International Journal of Nursing Studies, 49(2), 220-229. doi:10.1016/j. ijnurstu.2011.09.003 Shim, B., Barroso, J., Gilliss, C. L., & Davis, L. L. (2013). Finding meaning in caring for a spouse with dementia. Applied Nursing Research, 26(3), 121-126. doi:10.1016/j.apnr.2013.05.001 Skarupski, K. A., McCann, J. J., Bienias, J. L., & Evans, D. A. (2009). Race differences in emotional adaptation of family caregivers. Aging and Mental Health, 13(5), 715-724. doi:10.1080/13607860902845582 Thinnes, A., & Padilla, R. (2011). Effect of educational and supportive strategies on the ability of caregivers of people with dementia to maintain participation in that role. American Journal of Occupational Therapy, 65(5), 541-549. doi:10.5014/ ajot.2011.002634
For more than 70 additional continuing nursing education activities on home healthcare topics, go to nursingcenter.com/ce.
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