Keywords

These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Although the diagnosis of Alzheimer’s disease is unique to the individual, its effects extend to every family member. The course of its journey is especially challenging because there is no single linear continuum of support over the course of care. And, there is no recipe book of care. Alzheimer’s families seek information at different points in their caregiving careers or at different points in their family member’s disease trajectory. Despite recognized diversity and the need to customize family support and education, most Alzheimer’s families must ultimately identify and negotiate complex decisions, provide strenuous, intimate physical care, and learn to manage strong emotions, anxiety, ambiguity, and uncertainty. How this translates to practice is that education, training, and support programs must be continuously available, offered through a variety of mediums, and accessible from familiar and trusted local sources.

The Essence of Alzheimer’s Family Care

Alzheimer’s family care has been likened to “running a marathon without ever seeing the finish line” or “solving an equation with no constants.” Paramount from the perspective of both the person with Alzheimer’s disease and the caregiver is the knowledge that it is the individuals with whom they interact through their journey that shape their experiences (Cockerill et al., 2006). Although there are many studies of survival in Alzheimer’s disease, only recently are there studies of survival among Alzheimer’s family caregivers (Kiecolt-Glaser et al., 2003; Schultz & Beach, 1999).

The shift of residence from home to a facility provides no shield for the caregiver to be burden free. Studies continue to show that the majority of all nursing home residents have some form of dementia and that 70% of family caregivers continue to actively provide care. Although the direct caregiving tasks and responsibilities transfer to those responsible in the facility, the family caregiver of someone with Alzheimer’s disease remains vulnerable to depression and anxiety and cardiometabolic effects with more pronounced effects among those who visit most frequently (Schulz et al., 2004; von Kanel et al., 2011).

While all family caregivers need information, education, training, and support, the identification of families who are most at risk for negative caregiving consequences should be the logical focus of professionals. Prioritization assists in the allocation of limited resources. Among Alzheimer’s disease family caregivers who are most likely to be at risk are those who: (a) are older than 50 years of age, (b) have low income or low education, (c) perceive no choice in their caregiving role, (d) co-reside, and (e) provide a high level of care as evidenced by the amount of time spent caregiving and the extent of caregiving tasks, especially hands-on activities of daily living (Gwyther, 2005).

As the composition and complexities of families in the USA are changing, there is a growing emergence of children who are caring for family members with Alzheimer’s disease. The first national study of this issue shows that the top diagnosis among 1.4 million caregiving youth is Alzheimer’s disease (National Alliance for Caregiving [NAC] & United Hospital Fund [UHF], 2005). Children and grandchildren who are fulfilling this role are also at risk with interruptions in their education, missing school/after school activities, and/or not completing their homework (Siskowski, 2006). Although there is a paucity of research about caregiving youth in the USA, studies of “young carers” in the UK show that these children have an average age of 12 years, and incur negative ramifications of caregiving that mirror the adult family caregiver’s physical, psychological, and financial caregiving consequences (Ryan & Fox, 2003).

Evidence for and Limits of Caregiver Education and Training

There are unique challenges in the care of an individual with dementia for which no one person is fully prepared prior to the experience. How family members react, their capacity to fulfill specialized care roles, and their responses to the caregiving role may ease the burden on the one family member who has the most responsibility. The need for caregiver education arises at the onset of diagnosis and may minimize and/or prevent multiple negative consequences of caregiving including immunosuppression, coronary heart disease, hypertension, anxiety, depression, exacerbation of chronic illnesses, and even premature death that may be related to hyperproduction of IL-6 among caregivers of persons with dementia. IL-6 is a proinflammatory cytokine that is typically associated with age-related conditions. The production of IL-6 was four times greater among stressed caregivers (Kiecolt-Glaser et al., 2003).

Research findings and meta-analytic studies of the effectiveness of caregiver education programs conclude that they have modest effects on knowledge about services, improvement of caregiver psychological and social well-being, and caregiver problem-solving abilities (Fortinsky, Kercher, & Burant, 2002). Multicomponent programs of caregiver support and education hint at cost effectiveness with findings of delayed institutionalization and reduced use of health care services (Brodaty, Green, & Koschera, 2003; Mittelman, Haley, Clay, & Roth, 2006).

Although there has been increasing attention to educating the general population about memory disorders and care using multimedia presentations, it does not appear that increasing public awareness with information about Alzheimer’s disease is effective in building an education base and then translating the knowledge to understanding the person with the condition. A qualitative study of family caregivers conducted by Paton, Johnston, Katona, and Livingston (2004) indicates that the behaviors of individuals with Alzheimer’s disease are thought by the majority of family caregivers to be in their control. The behaviors of persons with dementia can be understood as “unmet needs”, anticipated, and “managed,” but not necessarily “controlled”; this is the focus of most dementia caregiver education programs. When the caregiver accepts that there is no blame, shame, or stigma, it may be easier to overcome the traditional barriers to accepting warranted external help and home services prior to, and in the prevention of, caregiver exhaustion.

Educational Materials as a Form of Alzheimer’s Family Support

The Alzheimer’s practice literature supports the largely intuitive value and supportive benefits of education programs and materials (Toseland, 2004). Educational materials have the advantage of staying power with the potential for broad dissemination. They are published in a variety of media and formats that can easily be re-produced, downloaded, viewed, and passed among family caregivers, casting a broader net than programs that require time commitment, effort, or physical attendance. Educational materials in the public domain increase awareness of the issues, can be re-read or referenced as needed, and are available in multiple mediums for diverse audiences, such as the Internet-based “Powerful Tools for Caregiving” for use in the workplace.

There are comprehensive, well-indexed, and regularly updated practical books about Alzheimer’s family care that range from The 36-Hour Day to Learning to Speak Alzheimer’s for general audiences, to books targeting adult children, such as Alzheimer’s Solutions. There are DVDs, interactive Web-based programs, free online video clips on driving from the Alzheimer’s Association or from Terra Nova, brochures, pamphlets, newsletters, webcasts, and Web sites that focus on a range of family caregivers and family care contexts.

The reader or recipient of the information typically dictates the medium, content, and dissemination strategy. For example, adult children caregivers may seek educational materials on the Internet (www.aarp.org/caregive) or the Alzheimer’s Association Carefinder (www.alz.org/carefinder) that assists in finding local options and knowing appropriate questions to ask. Public awareness documentaries, such as the Complaints of a Dutiful Daughter (1994) or The Forgetting (2008), have staying power. These resources are quite different from an earlier, equally effective foto-novella, What is Happening to Abuelito?, an Alzheimer’s Association bilingual booklet for low-literacy, multigenerational Latino audiences that is illustrated in a culturally competent and appropriate soap opera story format.

The National Institute on Aging (NIA) has also produced valuable public references such as Caring for a Person with Alzheimer’s Disease: Your Easy-to-use Guide from the National Institute on Aging (2009) and two attractive low-literacy booklets titled Understanding Memory Loss and Understanding Alzheimer’s Disease (2006). Similarly, Journeyworks Publishing offers a low-literacy cartoon-style 1995 guide, Caring for a Person with Memory Loss and Confusion: An Easy Guide for Caregivers. There are topical books or brief pamphlets addressing identified major concerns of Alzheimer’s families. Examples include NIA’s English and Spanish 2002 booklets, Home Safety for People with Alzheimer’s Disease, The Hartford’s At the Crossroads: Conversations about Alzheimer’s Dementia and Driving and The Calm Before the Storm: Family Conversations about Disaster Planning, Caregiving, Alzheimer’s Disease and Dementia (2009) or AARP’s 2003 free booklets in English and Spanish, Steps to Success: Decisions About Help at Home for Alzheimer’s Caregivers. There are first-person narrative accounts with advice specific to spousal caregivers: Your Name is Hughes Hannibal Shanks (1996) and A Curious Kind of Widow: Loving a Man with Advanced Alzheimer’s (2006); for adult children caregivers, The Alzheimer’s Action Plan: A Family Guide (2009); and for young children, When Meme Came to Live at My House (1998) and What’s Happening to Grandpa? (2004).

Although there is little research or evaluation of the use or behavioral impact of these materials, the sheer numbers of books (1,300) found on Amazon.com or links (2.48 million) at Google.com under “Alzheimer’s care,” the marketing hype about the number of hits on Alzheimer’s personal and informational websites, and the burgeoning number of television and radio documentaries on this topic indicate that these materials are being widely disseminated. It is up to the consumer to determine the reliability and accuracy of information.

What is missing from the evidence base for practice in Alzheimer’s care are specific protocols, guidelines, or evaluation tools to provide assistance in the selection of the right materials for a specific family. Each family approaches Alzheimer’s disease with a different set of experiences; psychosocial, religious, and cultural norms; and literacy levels that complicate the care context. These factors impact the decision of the preferred intervention at a particular time or teachable moment along the caregiver’s and/or care recipient’s continuum or care trajectory.

Educational Interventions

A randomized controlled trial in four Alzheimer’s demonstration states used an individualized family education intervention focused on targeting and dosing information so as not to overwhelm Alzheimer’s family caregivers (Gitlin & Gwyther, 2003). Although findings from this study are unpublished, it is apparent that a shotgun approach to giving families a little bit about all aspects of Alzheimer’s care at one point in time is probably not effective.

There are several ways to deliver or provide education for Alzheimer’s caregivers (Toseland, 2004). Professionals can provide one-on-one teaching in the home (Cocoran, 2003); use a monograph, Practical Skills Training for Family Caregivers, from the National Center on Caregiving, Family Caregiver Alliance; or combine individual and family counseling and training from a health or human service agency base (Mittelman, Epstein, & Pierzchala, 2002; Mittelman et al., 2006). In these in-home or agency settings, counseling and education are offered in the context of service provision.

Education can be offered equally well in the framework of care coordination or case management programs (Austin, Chernesky, Gwyther, & Grube, 2000). In addition, the Alzheimer’s Association and the National Chronic Care Consortium’s care management project demonstrated excellent results from education offered in the context of chronic disease management (Bass, Clark, Looman, & McCarthy, 2003).

Caregiver education is also a major component of psychoeducational, time-limited, skillbuilding group interventions (Hebert et al., 2003; Toseland, 2004); community workshops or educational forums; community lecture series followed by discussion; and technology-based interventions, such as telephone-mediated groups (Bank, Arguelles, Rubert, Eisdorfer, & Czaja, 2006), computer-mediated groups, and videoconferencing. Furthermore, a dual form educational technique using telephonic coaching with a videotape series has proven to be successful for caregivers of individuals with Alzheimer’s disease (Steffen & Mangum, 2003).

There have been other types of educational and intervention strategies, including an objective driving skills evaluation that can help both the care recipient and caregiving family make decisions about ongoing driving capabilities. These evaluations are available through memory disorder centers, occupational therapy programs, and in some states, the Division of Motor Vehicles. The testing includes neuropsychological components as well as the use of simulators in nonroad tests. The impartiality of these tests assists the clinician to respond to the questionable reliability of caregiver requests for the person with Alzheimer’s disease to cease driving (Reger et al., 2004). Thus, an independent resource along with professional clinician guidance assists all members of the family care team to make the important decision of when to stop driving. No longer driving a car, even though it is for safety reasons, is the equivalent to loss of independence and a signal of disease progression. It becomes a challenging, unrelenting, and uncomfortable issue for many caregiving families. Assurance of alternative affordable transportation may ease this crucial transition (A useful video is “Into the Other Lane: Driving and Dementia,” from Terra Nova Films 2010).

A role of the clinician, health care provider, or other professional caregiver is also that of a family educator, providing guidance as the disease progresses, and the line becomes finer for caregiver discernment about the ability of the person with Alzheimer’s disease to engage in the decision-making process and make informed decisions. Research shows there is a marked lack of accuracy in the caregiver’s ability to judge the capability of the care recipient to make decisions (Hirschman, Joyce, James, Xie, & Karlawish, 2005). Thus, the health care provider should offer education to assist caregivers in the assessment of both driving and other decision-making capabilities.

A Wide Variety of Support

The need for support services varies with the caregiver and family context; this includes employment status and preillness caregiver strength and resiliency. Among adult family caregivers, 73% report that praying is their greatest source of strength in helping them to cope (NAC & AARP, 2004). A qualitative study among both Catholic and Protestant caregivers of spouses with Alzheimer’s disease shows that spirituality and religion are an important source of support in coping with the stressful situation of caregiving (Stuckey, 2001). Providers who are involved with families in which there is a caregiving youth should be cognizant that the young person may not have a solid spiritual foundation upon which to draw inner strength and, therefore, may require access to counseling, spiritual resources, and/or education to learn coping skills.

By caring for themselves, family caregivers for persons with Alzheimer’s disease can concurrently benefit their care recipient. There is substantiation for improvement in care recipient mood as well as postponed nursing home placement when female caregivers of persons with Alzheimer’s disease improve their own mental health and physical well-being through exercise and dietary programs (King, Baumann, O’Sullivan, Wilcox, & Castro, 2002). In addition to better levels of fitness, the caregiver also shows improvement in sleep as a result of these interventions. Moreover, there is concomitant reduced psychological distress that is of mutual benefit to both the individual with Alzheimer’s disease and the family caregiver.

There is a broad spectrum of support services available to caregivers of persons with Alzheimer’s disease to augment their inner strength and fortitude. Each modality incorporates different objectives and offers unique features to address specific caregiver concerns or needs. A service may be as simple as a 24-h, 7-day-a-week toll-free help line that provides comprehensive information about in-home evaluation, care management, skillbuilding, fitness training, chore services, education, injury prevention, stress management, day care, respite services, and other topics. The Alzheimer’s Association 24-h Contact Center provides immediate access to skilled social workers who speak almost 40 different languages. The mere existence of a growing number of for-profit and nonprofit support services speaks to the recognition of and response to a need by both corporate America and various governmental agencies.

Over 20 years ago, callers to a help line service that specializes in Alzheimer’s disease made an average of nearly four requests. They sought advice about home, day care, and support group services, as well as for general dementia information (Coyne, 1991). Today, these services still exist and are augmented by others, including those utilizing technology. The effective use of technological advances reduces the cost of care from the more expensive yet traditional one-to-one personal counseling intervention.

An automated interactive voice response intervention that was designed to assist caregivers of persons with Alzheimer’s disease and disruptive behaviors is an example of a one tested form of support. The array of services provided include (a) telephonic stress monitoring and counseling, (b) information, (c) personal voice mail connections to dementia care specialists, (d) a voice mail telephone support group, and (e) a distraction call for the person with Alzheimer’s disease. In an evaluation of this program, findings showed that women in the intervention group who had not yet mastered the skills of managing a loved one with this illness and caregivers with the highest levels of anxiety benefited the most from this modality (Mahoney, Tarlow, & Jones, 2003).

Marziali and Donahue (2006) documented the use of Internet-based psychosocial intervention. They provided information, videoconferencing, email communication, and facilitated on-line sessions for older caregivers of persons with neurodegenerative diseases. The results demonstrated a significant reduction in stress between an intervention group and a control group. Although the sample size was small and the control group experienced a 54% dropout after 6 months, the study provides evidence to support the use of technological support for these family caregivers. A pragmatic advantage to this approach is its convenience for the family caregiver, offering flexibility and ease of access in the comfort of home.

Each study reflecting new technologies or support services points to the need to use a targeted, individualized approach to address the family’s health status and the caregiver’s capabilities. The utilization of professional care managers to facilitate family involvement in the development of a care team approach, individualized guidance, recommendations for home safety, and local resources, including respite, is valuable for both the person with Alzheimer’s disease and the caregiver. Care managers, located through the National Association of Professional Care Managers, may be hired privately or be offered through community resources. Alzheimer’s family consultants, who are available through regional programs, also serve valuable roles as a sounding board, trusted advisor, and a referral resource for caregivers.

Support groups are among the most common types of activities to assist, educate, and empower family caregivers, and yet many caregivers do not participate in them. Caregivers who have never attended a support group rate themselves as less burdened than caregivers who have attended a support group, and have adequate personal support systems (Martichuski, Knight, Karlin, & Bell, 1997). Caregivers who do not attend support groups cite convenience as a primary reason. Virtual group caregiver support, available for all levels and types of caregivers, continues to evolve as technology advances and Internet usage and comfort with its security and capacities increase. Virtual groups address barriers to participation and also provide a resource for caregivers in rural areas, where in-person access is limited.

The REACH II (Resources for Enhancing Alzheimer’s Caregiver Health) project, supported by the NIA, evaluated the effectiveness of a structured multicomponent intervention adapted to diverse individual risk factors and found that it could increase caregiver quality of life and reduce caregiver depression (Belle et al., 2006). This and other studies support the wisdom of matching caregiver needs to a skills oriented multicomponent intervention responses (Gitlin, Hauck, Dennis, & Winter, 2005; Gwyther, 2005).

In other parts of the world, including the UK and Australia, caregiver assessment is standard practice in the health and human services delivery systems. Evaluation results help to prioritize resource allocation. There is a global need for family caregivers to be able to continue in their role; no country has either the labor pool or financial resources to replace family caregivers if they were to abandon their commitment. There are current policy recommendations in the USA to encourage a shift to a similar practice by implementing national caregiver assessment (Feinberg, Wolkwitz, & Goldstein, 2006). Without a focus on a caregiver’s capabilities or well-being, when there is a need for home care services, the health provider looks to how the family caregiver can assist in the accomplishment of health care related tasks rather than first evaluating the caregiver’s capability and capacity. This expectation, without support for the caregiver, especially for the older spousal caregiver, may result in harm.

A study conducted in the UK was inconclusive on the relative effectiveness of individualized assessment and support, conventional personal support vs. technology-based support (computers or telephones), specific caregiver training, or multifaceted support strategies (Thompson & Briggs, 2000). However, the research cites the challenges of gathering specific outcome data because of the plethora of variables. Thus, there is neither a recommendation of one type of intervention over another, nor is there any evidence to discontinue a specific type. A multinational analysis reports that there are no universally recognized successful interventions to effectively reduce caregiver burden (Torti, Gwyther, Reed, Friedman, & Schulman, 2004).

People, and older learners in particular, can reach a level of understanding when stress is minimal and when they have the opportunity to practice in a non-threatening environment, such as the home. Sometimes simple environmental adaptations can increase the ease of day-to-day caregiving and household tasks. Gitlin et al. (2005) studied an occupational therapy intervention using six in-home sessions to assist families in space, efficiency, and safety changes to help the daily functioning of the person with dementia. The program demonstrated diminished caregiver burden at a statistically significant level (p  <  0.05). Follow-up therapy via telephone and an additional home visit were also part of the treatment plan. Evaluation was done at 6 and then at 12 months to determine the permanency of the changes. Results show somewhat effective maintenance of change; however, there was a need for more frequent professional contact and ongoing skill education.

The well-being of the caregiver is critical in the evaluation process as well as in the provision of assistance. As reported by Zanetti, Geroldi, Frisoni, Bianchetti, and Trabucchi (1999), a caregiver who is burdened perceives a poorer status of the patient and vice versa. More recent studies suggest a strong correlation between the caregiver’s well-being and the patient’s competencies in daily living activities (Berger et al., 2005). As deficits in independence as well as behavioral disturbances increase over time, the caregiver burden/depression intensifies. Thus, the practitioner must be aware of the caregiver’s status –to fully evaluate the caregiver’s reports of patient functioning, accompanied by information, education, and guidance based on the caregiver’s needs at the time.

The provision and the use of regular respite by family caregivers is among the most needed of support services for persons caring for individuals with Alzheimer’s disease. Respite can be obtained through a family/friend care team, volunteer services, adult day centers, paid in-home help, and through short- or long-term facility placement. Two keys to establishing successful respite care are to begin it early in the Alzheimer’s care journey and to provide regular breaks. Findings indicate that in-home respite significantly reduces plasma epinephrine in stressed caregivers of persons with Alzheimer’s disease (Grant et al., 2003). This reduction in epinephrine may reduce mortality among burdened caregivers.

The type of respite resources utilized should be responsive to caregiver needs and change as caregiving demands increase. The physician’s encouragement of the family caregiver to utilize respite care promotes the use of this most beneficial resource, which is a strategy to maintain caregiver health and well-being.

Policy Initiatives

There are three main policy areas that should be included for future consideration regarding the education, training, and support of family caregivers: (a) promotion of the integration of health care with community support systems, (b) individual caregiver and family assessment with needs-driven flexible response, and (c) inclusion of benefits and supports for caregivers of any culture and any age.

All too often, there is no interface between the medical team and the community-based care team, which can be an extension of the clinician’s eyes and ears to make more informed care decisions. Additional field input and research are needed in identifying family caregivers who are most at risk for negative health outcomes, along with the best practice packaging of individualized, multifactorial, multidisciplinary, and affordable approaches to deliver supportive interventions to persons with Alzheimer’s disease and their caregivers. Such a package should include pharmacologic interventions for the person with dementia symptoms since they have been shown to reduce caregiver burden (Torti et al., 2004).

The extent of caregiver burden can influence the treatment modalities and the use of patient medications offered by the physician. In a study of individuals with Alzheimer’s disease and their caregivers, Karlawish, Klocinski, Merz, Clark, and Asch (2000) found that when a caregiver’s burden experience was lower, there was increasing importance of patient quality of life and the preservation of cognition and function. Thus, physician encouragement of early integration of support systems for the family caregiver and the minimization of the caregiving burden may maximize patient outcomes.

Research shows that there is a lack of consistency between what the mild-to-moderate stage Alzheimer’s patients are willing to risk from a treatment perspective and what the caregiver thought the care recipient’s choice for treatment would be. An informed family and an integrated family care team process with coordinated community care will promote the use of collective wisdom in creating and implementing a care plan. Policy that fosters the integration of successful education, training, and support practices avoids duplication and enhances the caregiving family experience. Health care delivery practitioners should routinely and seamlessly transition their care practice to incorporate community-based resources and maximize the family caregiving experience.

Integration of care incorporates the full spectrum of disease management along the continuum of the Alzheimer’s disease journey. This occurs in concert with the family’s wishes and understanding. Although there is a lower survival rate, studies shows aggressive end-of-life treatment for people with Alzheimer’s disease and an acute illness at a rate comparable to people with other conditions with resultant caregiver confusion (Morrison & Siu, 2000). Health care providers who work in partnership with family caregivers can arrive at care team decisions for appropriate palliative end-of-life care.

Not only is caregiver assessment important for determining a family caregiver’s present capacity and capability, it is also vital in examining the extent of preexisting health conditions. Both areas are important for identifying caregivers at greatest risk and allocating limited intervention resources. Preexisting illnesses, such as recurrent depression, cancer, hypertension, diabetes, and/or coronary disease are among those cited for their potential to increase caregiver health risk (Vitaliano & Katon, 2006).

Caregiver burden scales, or levels of care, use a formula based on time spent in caregiving and the number and types of caregiving activities that the family caregiver does. The incorporation of health parameters into these scales is logical to improve the identification and prioritization of caregivers and families at greatest risk. These factors are also critical in the development of an integrated and family-centered collaborative care approach to enhanced outcomes for both the care recipient and caregiver. They may also help a family determine which family member should or should not accept caregiving responsibilities.

Meeting the caregiving policy challenges of a nation that is rapidly becoming increasingly diverse and in which more and more youth are caregiving is daunting, including the development of neutral and universal language. The concept of support or “being there” in the room or residence with the care recipient, in addition to caregiving responsibilities and worries, warrants further research to determine caregiving effects. The Mahoney Caregiver Vigilance Questionnaire©, with its culturally neutral language, may assist in meeting needs for cultural understanding and acceptance (Mahoney, Jones, et al., 2003).

Policy makers need to consider supporting various social resources and cultural variances and expectations. There is increasing evidence in the value of using the arts as a medium of expression for people with dementia, thus providing family caregivers with an outlet not only for activity but also for communication and recognition of the capabilities of person who remains (Basting, 2006). Such mediums can bridge gaps in intergenerational care.

Although it would be potentially helpful, it is unlikely that caregiver education will become part of physician’s and other health care professional’s core curriculum in the near future. Communication is a two-way street. Specific programs, such as Communicating Effectively with Health Care Providers, offered through the National Family Caregivers Association network of workshop leaders, and the Partnering with Your Doctor workshop, offered through the Alzheimer’s Association, are two avenues for caregivers to improve the way they hear and respond within a health care setting. The physician, who exhibits empathy, even by acting, is most likely to be an effective practitioner.

Federal policymakers are increasingly aware of the importance of supporting family caregivers and have proposed several bills to specifically assist caregivers of persons with Alzheimer’s disease. These include increased funding of the National Family Caregiver Support Program, with revisions to give priority for resources for caregivers of persons with Alzheimer’s disease. The Lifespan Respite Care Act signed in December of 2006 creates grants for state agencies and organizations to recruit and train respite care workers, provide respite as well as information and access to support services.

In addition, there are several bills that are pending which, if passed, would assist individuals and families dealing with Alzheimer’s care. Examples include the Ronald Reagan Alzheimer’s Breakthrough Act and the 2011 National Alzheimer’s Project Act. The Alzheimer’s Disease Supportive Services Program Evidence-Based Caregiver Interventions and Innovations Programs build on the 1993–2006 Alzheimer’s Demonstration Grant to States Program to encourage the development of consumer-directed respite services, caregiver interventions and systems change activities that are responsive to Alzheimer’s families. Other general caregiving bills, such as the Family and Medical Leave Enhancement Act and the Military Family Support Act, would also be inclusive of caregivers of persons with Alzheimer’s disease. There is no existing bill to include education, training, or support services for a growing group of unrecognized long-term care providers: children.

What’s Ahead?

Directly parallel to the rising numbers of persons with Alzheimer’s disease is an increase in the numbers of family caregivers of all ages, including caregiving youth. Effective pharmacological interventions that slow disease progression contribute to an extended duration of caregiving. Technological advances are already playing a major role, and will continue to do so at a rapid pace, to increase caregiving family safety and to provide choice in the selection of therapeutic modalities that are appropriate for a particular family, and promote caregiver health. The epitome of comprehensive care is the prevention of negative consequences when caregiving for a person with Alzheimer’s disease. The development of accurate assessment, evaluation, and intervention tools and services, and the determination of appropriate packages of education, skill-building, and support programs to promote the best quality of life for a caregiving family are the challenge for the future.