Treatment interventions are usually based upon goals set by the family and the healthcare team. Interventions are designed to maximize function by addressing cognitive, mood, and behavioral impairments, as well as to treat any modifiable or reversible causes of impairment (USPSTF, 2013).
Non-pharmacologic approaches based on family caregiver interactions have the strongest evidence base for the successful management of challenging behaviors. This includes caregiver training and support, increasing the activity of the person with dementia, enhancing communication, reducing the complexity of the physical environment, and simplifying tasks for the person with dementia (Kales et al., 2015).
Engaging people in regular activities may be a dementia prevention strategy. Regular participation in specific physical, cognitive, and socially stimulating leisure activities during mid-life reduces the risk of dementia in later life by 28% to 47% (Dannhauser et al., 2014). This activity-associated risk reduction is probably due to the positive effects that specific activities have on known modifiable dementia risk factors that cause an estimated 50% of dementia and include physical and cognitive inactivity, obesity, hypertension, and diabetes (Dannhauser et al., 2014).
Cognitively stimulating activities are also associated with reduced risk of cognitive decline in later life and more pronounced effects are related to increased complexity of activities and associated environments. Social activities are also associated with reduced dementia risk. Socializing robustly stimulates memory, attention, and executive processing (Dannhauser et al., 2014).
Person-centered care is a philosophical approach that states that a person with dementia deserves kind and supportive treatment with the rights that we reserve for any other individual, namely dignity, respect, and autonomy. Person-centered care promotes inclusion of the person living with dementia and their caregivers in care and treatment decisions, with the aim of increasing positive outcomes for both (Handley et al., 2015). Its success depends not only on caregivers’ skills and knowledge but also on adapting the entire care context to the clients’ and caregivers’ needs and preferences (Desrosiers et al., 2014).
Person-centered care may reduce unwanted behaviors and improve outcomes. Interventions based on this approach have lowered the rate of neuropsychiatric symptoms, falls, and the use of psychotropic drugs in nursing home residents with dementia (van de Ven et al., 2014).
Person-centered care is designed to be an alternative to or to complement pharmaceuticals in reducing challenging behaviors in individuals with dementia. It has been identified by the Committee on Quality of Health Care in America as one of the main areas that the healthcare system should address in order to improve the quality of healthcare, especially long-term care.
Considering a client’s personal history and preferences will help caregivers design thoughtful interventions. A client’s past medical and social history is essential to understanding their current needs. Sharing this information with the healthcare team allows the entire team to be aware of and sensitive to the client’s needs (Constand et al., 2014).
Supporting a client’s history and needs involves:
There is a profound and direct connection between their environment and how people feel and behave. Buildings thoughtfully designed for the care of people with dementia encourage community, maximize safety, support caregivers, cue specific behaviors and abilities, and redirect unwanted behaviors (Campernel & Brummett, 2010). This approach to dementia care considers the consequences of the built environment on the well-being of clients with dementia (Rijnaard et al. 2016).
The built environment is the constructed, physical surroundings (interior and exterior) where an individual eats, bathes, sleeps, and interacts socially. The environment has a profound effect on a person’s sense of well-being and can play an active role in promoting well-being and improved functioning (Soril et al., 2014).
A therapeutic environment is an environment that is supportive of individuals with dementia and their families. It recognizes that people with dementia are influenced by their surroundings and do better with environments that are individualized, flexible, and designed to support differing functional levels and approaches to care (Campernel & Brummett, 2010).
Homes or buildings thoughtfully designed for the care of people with dementia encourage community, maximize safety, support caregivers, cue specific behaviors and abilities, and redirect unwanted behaviors (Campernel & Brummett, 2010). Unfamiliar, chaotic, or disorganized environments have the opposite effect—they can cause anxiety, disorientation, and contribute to behavioral problems.
Specific design principles have been shown to reduce unwanted behaviors and enhance a sense of well-being in people with dementia. Examples include:
Although the following video from the Social Care Institute for Excellence explains a dementia-friendly environment in a care home, the principles apply to adult day care as well.
Well-designed interventions utilizing the skills of various team members have been shown to reduce or even eliminate agitated or aggressive behaviors (Burns et al., 2012). Staff education has been shown to lead to reductions in behavioral outbursts and fewer episodes of restraint use (Nowrangi et al, 2015).
“Multimodal” interventions are recommended, which means using different tactics and activities based upon the needs of the person with dementia. This approach utilizes the skills and services of multiple professions, which ideally form a team to assess and implement approaches for each individual under their care.
Cognitive stimulation, music therapy, exercise, massage, therapeutic touch, acupressure, and tactile massage have been shown to be successful for treating challenging behaviors. Individual behavioral therapy, bright light therapy, aromatherapy, animal therapy, multisensory stimulation,* Montessori activities, and individualized, person-centered care are also recommended (Burns et al., 2012).
*Multisensory stimulation: a controlled multisensory environment uses light, sound, scents, and music to initiate sensations. These have both relaxing and activating effects on the various parts of the brain related to sensory perception. The specific design directs and arranges the stimuli; it creates interest, brings back memories and guides relationships.
Cognitive therapists help individuals and their families identify goals and strategies aimed at improving cognitive function. Interventions address difficulties considered most relevant by the person with dementia and his or her family. There is some evidence that cognitive training may enhance the effects of pharmacological therapy (Bahar-Fuchs et al., 2013).
Cognition-based interventions typically involve a range of activities and discussions, can be conducted one-on-one or in groups, and are aimed at general enhancement of cognitive and social functioning. A Cochrane Review concluded that general cognitive stimulation and reality orientation consistently produced improvements in general cognition and, in some cases, in self-reported quality of life and well-being, primarily for people with mild to moderate dementia (Bahar-Fuchs et al., 2013).
Social participation is involvement in interpersonal interactions outside the home, including social, leisure, and community activities and work. Reduction of social interactions can lead to poor health outcomes and loneliness (Goll et al., 2015).
Reduced social participation may be related to the loss of social identity derived from a profession, job, or membership in a group. For example, an older person who identifies as a “care-provider” may not want to attend a support group for fear that he or she would become a “care-recipient.” Widespread ageism may lead individuals to avoid groups for older people in case they become identified as “old” and thus stigmatized (Goll et al., 2015).
In one study, participants sought to uphold independent and youthful identities. They frequently emphasized their self-sufficiency, distinguished themselves from “old” people whom they described as dependent and decrepit, and avoided opportunities for support in case this marked them as old and dependent. Participants avoided social situations that contradicted their preferred identities, and wished for opportunities that instead provided identity-reinforcement (Goll et al., 2015).
Some older adults may avoid social participation out of fear of rejection or exploitation by others. Social fears have been linked to loneliness and social isolation in working-aged adults and in lonely older people. Loneliness can reflect a lack of perceived safety in social situations, which leads to cognitive and behavioral patterns that reinforce loneliness (Goll et al., 2015).
Individual activities in adult day care setting. Source: ADEAR, 2014.
Talking therapies like Cognitive Behavioral Therapy (CBT) might enhance late-life social participation. However, since lonely and socially fearful older people are unlikely to engage in therapy without significant support, a more effective strategy might add CBT principles in pre-existing community groups. For example, organizations might challenge fears about attendance by emphasizing the friendliness of groups, implementing a “buddy” system for new members, normalizing social fears, and facilitating gradual steps towards participation (Goll et al., 2015).
Respite care is an often overlooked intervention that benefits people with dementia as well as their caregivers. It provides caregivers with a break, reduces caregiver stress, and provides stimulation and social interaction for the person with dementia. Respite care can be anything from a few hours to a few weeks.
Numerous studies have shown that family caregivers experience high levels of strain, resulting in poor health outcomes and lower quality of life for caregivers, and earlier institutionalization for care recipients. Respite care can relieve the burden of caregiving and facilitate aging in place. In spite of this, many caregivers believe that respite care will have negative outcomes for care recipients (Stirling et al., 2014).
There is evidence that respite care reduces caregiver burden and depression and increases feelings of well-being. Caregivers receive a break, feel less hostile toward the care recipient, and use fewer negative coping strategies. When people with dementia attend a day care program, caregivers experience benefits from improved sleep patterns and report decreased behavioral problems in the care-recipient (Stirling et al., 2014).
Despite the benefits to the caregiver, day care services are probably underutilized. Some reasons include:
Growing evidence suggests that lifestyle factors have a significant impact on how well non-demented people age, and physical activity is one of the most important protective factors against cognitive decline. Several small studies have demonstrated significant benefits for Alzheimer’s clients on cognition and also on quality of life and depression. Physical activity may provide a protective effect against cognitive decline, and this may also occur in clients already suffering Alzheimer’s dementia, improving clinical symptoms (Holthoff et al., 2015).
A growing body of evidence suggests that 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. This evidence suggests that exercise improves the ability to perform basic activities of daily living such as eating, dressing, bathing, using the toilet, and transferring from bed to chair. However, the effects of conventional exercise on other important outcomes such as cognitive function, mood, behaviors, and quality of life were less consistent. Complementary and alternative forms of exercise such as tai chi, yoga, and dance may be effective for improving these other outcomes (Barnes et al., 2015).
At the University of California at San Francisco, a recent pilot study involved an integrative group exercise program for individuals with mild-to-moderate dementia. The program, called Preventing Loss of Independence through Exercise (PLIÉ), focused on training procedural memory* for basic functional movements such as sit-to-stand while increasing mindful body awareness and facilitating social connection (Barnes et al., 2015).
*Procedural memory: a type of long-term memory that is responsible for storing information related to motor tasks such as walking, talking, cooking, and other learned tasks.
The results suggest that PLIÉ may be associated with improvements in physical performance, cognitive function, and quality of life in individuals with mild to moderate dementia as well as reduced caregiver burden when compared with an existing program that involved daily chair-based exercises. The magnitude of improvement observed with PLIÉ was substantially larger than what has been observed with currently approved dementia medications such as cholinesterase inhibitors and memantine, and affects a broader range of outcomes (Barnes et al., 2015).
Behavioral therapy using antecedent-behavior-consequence (ABC)—also called the problem-solving approach—may provide sustained improvements in behavior. One meta-analysis found that behavioral management techniques that focused on individual client’s behavior and individually oriented techniques provided longer-lasting (several months) positive effects on behavior when compared with placebo (Nowrangi et al., 2015).
In this approach, caregivers are encouraged to problem solve—to look for and understand the root cause of a behavior. Intervention includes solving problems within the environment, managing medication issues, and brainstorming with other caregivers. The problem-solving approach encourages caregivers and healthcare workers to identify critical points for intervention based on observing the antecedent, behavior, and consequence (A, B, C) of a challenging behavior.
The problem-solving approach is particularly effective when successful strategies are shared by staff, caregivers, and family members and used to uncover the cause of a particular behavior. This method helps staff and caregivers understand when and how often a behavior occurs and offers the opportunity for discussion and planning.
In a Norwegian study, researchers worked with healthcare workers in a small, rural nursing home to identify the effectiveness of the problem-solving approach in addressing challenging behaviors in residents with dementia. At the start of the study the care workers described what they understood about—and how they responded to—challenging behaviors. Most regarded challenging behaviors as a symptom of the resident’s dementia, including physical attacks, such as hitting, spitting, and pinching (Lykkeslet et al., 2014).
Prior to the study, the care workers shared their understanding of why certain disruptive behaviors occurred. One of the care workers described her reaction to the behavior of a female client:
I do not think she always knows that she pinches us . . . then we try to get away . . . we pretend that nothing has happened and her behavior is a great challenge to us, because her inhibitions against hitting and kicking are very low.
Another care worker described her reaction to wandering. Residents who wandered around or repeatedly said that they wanted to go home were identified as a challenge. The caregivers regarded such behavior as a symptom of dementia that affected other residents. They noted that when one patient wants to go home, others also want to go home Lykkeslet et al., 2014).
All the time she wants to go someplace, but does not know where. She puts on a lot of clothes and walks around . . . if I tell her the truth about where she is she becomes irritated, resigned, or offended.
During the first year of the study the staff reported that, as a result of being encouraged to look for the cause of a behavior, they began to get into the habit of searching for meaning in patients’ behavior and gradually began to change their attitude toward the people they were caring for. Health workers said they were learning to see peculiar behavior more as a result of a challenging situation than as a symptom of a difficult patient (Lykkeslet et al., 2014).
One of the care workers gave an example of a patient who did not want to eat her food:
She refuses to open her mouth, so it is impossible to feed her. Any new caregiver who helps her will often fail. When I assist her, I always start by touching her hand, holding her hand, and then she gradually starts to eat.
The care worker added that this patient might have misunderstood the situation and therefore did not trust the new caregiver, who had to spend some time building trust (Lykkeslet et al., 2014).
You cannot go straight to the task—she needs some preparation to understand what is going on and what she has to do.
By observing the patient’s reactions, the care worker understood that the patient needed time to prepare. She needed to understand that the situation was a meal and that the care worker wished her well (Lykkeslet et al., 2014).
Another care worker told about how she began to understand patients with poor verbal language.
We try to read their body language. Perhaps she is in pain . . . sometimes she can tell us . . . other times we get no answer.
Sometimes the care workers saw the behavior as a response to a critical situation—“because he is vulnerable he becomes angry.” As the study progressed, researchers began to observe changes in the care provider’s attitudes and approach to activities. They noted that when the caregivers experienced a situation as challenging, they more frequently started to reflect on the patients’ needs (Lykkeslet et al., 2014).
Mrs. Del Rio’s at Night
Mrs. Del Rio has moderate dementia and lives at home with 24-hour care from family members and a caregiver. She is often incontinent of urine at night and has been wearing a diaper for the last year when she is in bed. Her daughters usually have to change her diaper once or twice each night and occasionally need to change wet sheets if Mrs. Del Rio takes her diaper off at night. They keep a spare set of sheets and a pad handy just in case.
Antecedent: One night Mrs. Del Rio’s daughter is helping her mom get ready for bed. She bends over to help her mother put on the diaper but her mother gets very angry and shouts, “I despise that thing, I won’t wear it” and pushes it away. Her daughter explains the need to wear the diaper at night to keep from peeing in her bed. She also gets angry at her mother, thinking of her own fatigue and lost sleep when faced with the prospect of stripping a wet bed in the middle of the night. Mrs. Del Rio again refuses the diaper and climbs into bed.
Behavior: Mrs. Del Rio’s daughter is confused—her mother has never refused the diaper before. She is worried that her mother’s dementia is getting worse. She checks back in about an hour and slips a diaper onto Mrs. Del Rio while she is sleeping. A little while later she hears Mrs. Del Rio getting up to the bathroom and goes in to help her. She has torn off the diaper and angrily throws it to the ground. “I despise that thing and I won’t wear it” her mother yells. Her bed is also wet.
Consequence: When her mother wets the bed her daughter awakens fully and has a hard time getting back to sleep. She already gets up 2 to 3 times per night to check on her mother and can’t imagine losing even more sleep. Sometimes she awakens and finds her mom asleep in a wet bed and very cold. Her mother has frequent urinary tract infections and her daughters are making a concerted effort to keep Mrs. Del Rio clean and dry.Discussion: Mrs. Del Rio’s daughter tries to figure out what has changed. Her mother is usually easy to deal with and understands the reason for the diaper. After a little thinking she realizes that her mother might not like the new diapers she recently bought. They are too tight and chafe her mother’s skin. She offers a slightly larger, softer diaper to her mother who replies, “Yes, thank you—that’s much better. I love you” as she happily pulls up the diaper and climbs back in bed. In the morning both the diaper and the bed are completely dry. Mrs. Del Rio never complains about the diaper again.