Caregiving tends to emerge naturally from customary family transactions that involve support given and received before the onset of dementia. The need for care tends to escalate over time, from increased support for household, financial, and social activities, to personal care. For some, this will eventually develop into the need for almost constant supervision and surveillance. Important transitions in caregiving include the involvement of professional caregivers, institutionalization, and bereavement (ADI, 2013).
In developed countries, the vital caring role of families and their need for support is often overlooked, while in developing countries the reliability and universality of the family care system is often overestimated.
Alzheimer’s Disease International, 2013
All over the world, the family is the cornerstone of care for older people who have lost the capacity for independent living. In recent years, however, there has been tremendous growth in the paid, direct-care industry, which is playing an increasingly important role in sustaining the work of family caregivers. Family caregivers provide what is referred to as informal care. They are often cast into the role of caregiver unexpectedly and are largely unpaid or nearly unpaid. Overall, about half of people who need help with personal care have dementia, which creates a tremendous burden on family members (ADI, 2013).
The system of informal, unpaid care provided by family members is under tremendous pressure due to declining fertility rates and fewer young people willing to care for older adults. Changing attitudes and expectations among the young as well as increased workforce mobility mean that family members are not always living nearby their older adult relatives. The education of women—the majority of informal caregivers—has led to more workforce participation and less availability for informal care (ADI, 2013).
Most people with dementia live in the community, and for approximately 75% of these individuals care is provided by family and friends. More than 10 million Americans are caring for a person with Alzheimer’s disease or another type of dementia. The largest group of those caregivers are spouses, followed by children and children-in-law, mostly female. The typical profile of a dementia caregiver is a middle-aged or older female child or spouse of the person with dementia (Brodaty & Donkin, 2009).
In the United States, at least 60% of unpaid caregivers are wives, daughters, daughters-in-law, granddaughters, and other female relatives, although male caregivers are becoming more prevalent. In 2008 men made up 40% of family caregivers in the United States, an increase of 21% from a 1996 study by the Alzheimer’s Association (Brodaty & Donkin, 2009).
The challenges of providing home care have been well documented. Lack of support for family caregivers, lack of recognition and poor working conditions for home support workers, early hospital-to-home discharge policy, and poor system coordination are examples of the challenges faced by people living with dementia and their familial and formal caregivers. Furthermore, limited resources to implement and sustain home care and a shift of chronic care to community settings without the corresponding transfer of funds compound the difficulties encountered (Ward-Griffin et al., 2012).
Providing care to a family member with dementia is often a stressful experience that can erode the mental and physical health of the caregiver. Caregivers not only develop feelings of burden but also show higher levels of psychiatric symptoms, depressive and anxiety disorders, decreased immune function, and even a higher death risk compared to non-caregivers or the general population. Therefore, the World Health Organization stresses the importance of caregiver support (Blom et al., 2015).
Reducing caregiver strain and improving outcomes for those with dementia is possible when caregivers receive education, training, support, and respite. Caregivers can reduce their stress by getting enough sleep, eating properly, seeing their own doctors, and sharing their feelings about their caregiving duties with co-workers, family, and friends.
An innovative program in North Dakota called the Dementia Care Services Program trained consultants throughout the state to support individuals who care for people with dementia, offering emotional support, education, and referrals to local agencies that can help. After conducting an in-depth initial assessment, the consultants work with the caregivers to develop a care plan that lays out action steps to address key problems and subsequently check on their progress in following the plan (AHRQ, 2015a).
The consultants typically speak with the caregivers three times during the first six months and subsequently remain available to them for as long as they need support. Surveys of participating caregivers suggest that the program has helped them feel more empowered, which in turn has led to reduced need for costly medical services and placements in long-term care facilities for the dementia patients they serve. These reductions have generated an estimated $40 million in savings across the State, primarily due to the reductions in the likelihood of long-term care (AHRQ, 2015a).
A dementia care consultant discussing resources with family members.
Source: AHRQ, 2015a.
Another innovative program established by Indiana University’s Center for Aging Research, the Healthy Aging Brain Center uses a team-based collaborative care model to treat patients with dementia and support their caregivers. A multidisciplinary team conducts an initial diagnostic assessment, holds a family conference to communicate the diagnosis and develop an individualized care plan, and provides ongoing clinic- and telephone-based monitoring, care coordination, and support (AHRQ, 2015b).
The team also regularly collaborates with primary care providers to help them better manage their dementia patients’ health problems. The model has improved health outcomes for patients with dementia, including reducing emergency department visits, inpatient use, readmissions, and medication problems, and improving blood sugar and cholesterol control. Collectively, these improvements have generated significant cost savings (AHRQ, 2015b).
Yet another innovative caregiver support program, Mastery over Dementia, looked at the effectiveness of Internet-based training to reduce anxiety and depression among family members caring for a person with dementia. The results demonstrated that caregivers’ symptoms of depression and anxiety were significantly reduced after participating in the Mastery over Dementia program, compared to a minimal intervention in which caregivers received digital newsletters by e-mail (Blom et al., 2015).
The Internet course consists of eight lessons and a booster session with the guidance of a coach, who monitors the progress of participants and evaluates their homework. Each lesson has the same structure and consists of information (text material and videos), exercises, and homework, with an evaluation at the start and end of each session. The elements of the course were presented in the following order: coping with behavioral problems (problem solving); relaxation; arranging help from others; changing non-helping thoughts into helping thoughts (cognitive restructuring); and communication with others (assertiveness training). The booster session is provided a month after participants finish the eight lessons, and it provides a summary of what has been learned (Blom et al., 2015).
After every lesson, participants sent their homework to a coach via secure software. The coach sent electronic feedback to caregivers on their homework within three working days. The feedback had to be opened before the next lesson can be started. Participants are automatically reminded to start with a new lesson or to send in their homework. All participants in this study received feedback from the same coach, a psychologist employed by a healthcare agency with additional training in cognitive behavioral therapy and experience in the field of dementia (Blom et al., 2015).
From the perspective of family caregivers themselves, Internet support may have several advantages compared to face-to-face support. People can participate in an Internet course at the time that is most suitable for them; they do not have to travel to a healthcare professional, which saves time; and Internet support may be easier for them to accept because of the stigma associated with seeking help from a professional (mental) healthcare provider (Blom et al., 2015).
A growing body of evidence suggests that conventional exercise programs such as walking, resistance training, and seated exercises that focus on improving aerobic endurance, strength, balance, and flexibility have beneficial effects on physical function in individuals with cognitive impairment and dementia. A recent analysis of conventional exercise interventions in 937 individuals with dementia found evidence that exercise improves the ability to perform ADLs such as eating, dressing, bathing, using the toilet, and transferring from bed to chair (Barnes et al., 2015).
A handful of recent studies suggest that complementary and alternative forms of exercise such as tai chi, yoga, and dance may be effective in improving cognitive function, mood, behaviors, and quality of life. For example, studies have found that tai chi and yoga are associated with improvements in cognitive function and quality of life as well as physical function in older adults with and without cognitive impairment. In addition, dance-based exercise programs are associated with reductions in problematic behaviors and greater enjoyment in individuals with dementia. Taken together, these studies suggest that different types of exercise may offer different benefits, and that a program that combines different approaches may result in greater improvements across multiple domains. Physical and occupational therapy studies also suggest that a personalized, goal-oriented approach can lead to better outcomes in other settings (Barnes et al., 2015).
In the United States, long-term care service programs provide a great deal of care to those with dementia. About 8 million people are regularly served in adult daycare, home health, assisted living, nursing homes, and residential care communities. About one-third to one-half of the people served in these programs has a diagnosis of Alzheimer’s disease or other type of dementia (Harris-Kojetin et al., 2013).
Adult daycare programs are designed to provide both respite for family caregivers and meaningful social and physical activity for older adults with dementia. Depending on the facility, services can include personal care, counseling, physical and occupational therapy and, in some cases, health services.
For long-term care facilities, there is a trend toward designing facilities as homelike as possible. This idea was pioneered in Sweden in the 1980s, where a homelike environment for people with dementia was tried for the first time. Today, similar concepts can be found all over the world, from Green Houses in the United States, to group homes in Japan, to small-scale living arrangements in the Netherlands, to German shared housing arrangements (Gräske et al., 2015).
All of these concepts challenge the traditional view, in which care is organized around nursing and medical tasks and the needs of the institution. Living arrangements in small and homelike settings are built around person-centered care, respecting residents’ needs and choices. Daily routines include meaningful activities to encourage normal living while tasks focus on household chores such as cooking and baking (Gräske et al., 2015).
Family interactions and communication tend to change when a person enters long-term care. This is particularly true when work pressures are present, when the family member lives a long distance from the care facility, and when family members feel they have a limited role in the provision of care. The loss of in-depth communication, as well as social conversations, can result in the person with dementia feeling socially isolated and without the opportunity to express needs (Moyle et al., 2014).
One way to alleviate this stress is to encourage family members to become involved in a facility’s dementia care program. Dementia care programs are multidisciplinary and multi-departmental programs designed to meet the daily needs of individual residents. The quality and success of a dementia care program is strongly influenced by the environment of a care facility and by the facility’s philosophy of care, services available, and staff experience and training. A well-designed dementia care program:
A dementia care program should include cues and themes to help residents remain oriented to their environment, electronic door security for safety, comfortable and familiar furniture, specialized foods and beverages, and regular personalized group and individual activities.
The provision of care for this population is more complex than for residents needing just physical care; cognitive decline requires an additional level of support. This includes care plans designed to preserve the skills for ADLs and additional provisions for the socialization, stimulation, and safety of residents who wander or cannot call for help when needed. Additional training for staff members includes the causes of dementia and what to expect in the various stages of the disease (Zeman, 2015).
Good dementia care includes the recognition that there can be major differences in each person residing on a dementia unit. The type of dementia, the stage of dementia—and even the fact that several different dementias may exist in an individual at the same time—can be an issue. Additionally, most people with dementia are elders who may be suffering from multiple chronic diseases (Zeman, 2015).
The environment in which a person lives has a profound effect on their sense of well-being. Studies examining modifications to the built environment suggest that purposeful design can play an active role in promoting well-being and improved functioning. While no single definition of the built environment has been universally adopted, it is commonly understood as the constructed physical surroundings (interior and exterior) where an individual conducts activities of daily living—eating, bathing and sleeping—and interacts socially (Soril et al., 2014).
In her excellent book Kisses for Elizabeth, Stephanie Zeman offers dementia-care guidelines—not rules—based on commonsense. These guidelines go further to meet the needs of dementia patients than the OBRA regulations, which are inflexible and not directed at long-term care residents with cognitive disabilities (Zeman, 2015). Zeman suggests the following: