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, 2020, February 25).
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).
Caregiver training typically focuses on understanding behavioral disturbances as responses to discomfort, unmet needs, or attempts to communicate; creating soothing environments with optimal levels of stimulation; and responding to patients in ways that de-escalate problematic behaviors (e.g., distraction, giving patients clear instructions and simple choices, not rewarding the behaviors). The Alzheimer’s Association offers both online educational modules and in-person training classes, which also provide caregivers with professional and peer support. For patients whose behavioral and psychological symptoms occur primarily during personal care, a randomized, multi-site crossover study showed that training caregivers to deliver a protocol called Bathing without a Battle (available online at https://bathingwithoutabattle.unc.edu/) reduced agitation, bathing time, and antipsychotic use (Cloak and Khalili, 2020).
Engaging people in regular activities may be a dementia prevention strategy. 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 may be 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).
The most widely used and recognized person-centered care approach has four key elements: 1) valuing people with dementia and those who care for them, 2) treating people as individuals, 3) looking at the world from the perspective of the person with dementia, and 4) a positive social environment in which the person living with dementia can experience relative well-being (Røsvik and Rokstad, 2020).
Person-centered care focuses on valuing the person, upholding personhood, meeting psychological needs, adopting the person’s perspective, and ensuring a supportive social environment for people living with dementia. Existing approaches draw upon relationship-centered, rights-based, recovery, environmental, and family caregiver-based models to inform understandings of how best to achieve this (Rapaport et al., 2020).
Person-centered care has been shown to reduce agitation and improve quality of life in nursing home residents (Ballard et al, 2019). 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 as one of the main areas that the healthcare system should address in order to improve the quality of healthcare, especially long-term care.
History, Needs, and Well-Being
Well-being is a much larger idea than either quality of life or customer satisfaction. It is based on a holistic understanding of human needs and capacities. Well-being is elusive, highly subjective, and the most valuable of all human possessions.”
Dr. Bill Thomas, What Are Old People For? How Elders Will Save the World
Considering a client’s personal history, preferences, and needs guides caregivers in the development of appropriate, meaningful activities and contributes to the well-being of people accepting care as well as their caregivers. A person’s past medical and social history helps us understand their current needs and behaviors. Person-centered care should be the basis of care for people with dementia.
Understanding a person’s history, especially patients with behavioral symptoms of dementia, helps establish priorities regarding the nature and urgency of interventions, characterize the symptoms, identify potentially reversible exacerbating factors, including environmental factors, medications, discomfort, substance use, and pre-morbid psychiatric disorders; and create a baseline for measuring the effectiveness of treatment. The goal of the physical examination is to confirm historical data and identify alternative or contributing psychiatric or general medical conditions (Cloak and Al Khalili, 2020).
The goal is to understand and supporting a client’s history and needs by:
- Building relationships with clients and families
- Understanding their concerns and how illness has affected their lives
- Engaging in inter-professional collaboration
- Providing effective case management
- Developing good communication between clients and healthcare providers (Constand et al., 2014)
Aligning the Environment to Individual Needs
The built environment is the constructed, physical surroundings (interior and exterior) where a person eats, bathes, sleeps, and interacts socially. There is a profound and direct connection between the 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).
Identifying how a person with dementia might experience a lived space is important not only to compensate for their incapacities but also to facilitate their continuous engagement and activity in society. Among the central principals for the design of dementia-friendly environments are safety and security, simplicity, good structure, and familiarity Førsund et al., 2018).
Simple, structured, and familiar environments orient people and support wayfinding. Familiarity is related to predictability and continuity; it is also important for creating a sense of being at home in addition to supporting social relationships, identity, autonomy, and privacy. These are important elements of the experience of lived space (Førsund et al., 2018).
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:
- Providing private spaces and a separate room or recess for sleeping or napping
- Providing easily accessed public spaces and places for semi-private interactions
- Keeping public spaces clean and getting rid of odors
- Providing sunlight, ventilation, and getting rid of dark nooks and crannies
- Providing views to the outside
- Replacing institutional, centralized nursing stations with smaller, residential-looking stations
- Creating spaces to cue specific behaviors (activity kitchen, art and music therapy area, bistro/bar, rummaging room, library, coffee shop/internet café, quiet room, living room)
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.
Evidence-Based Intervention Programs
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.
Psychosocial and Environmental Interventions
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.
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).
Cognitive stimulation therapy (CST) is a treatment developed for people with mild to moderate dementia. It aims to enhance cognitive and social functioning using group therapy incorporating reality orientation, reminiscing, socializing and actively stimulating participants, while providing an optimal learning environment and the social benefits of a group. CST is the only evidence-based treatment recommended for people with mild to moderate dementia in the National institute for Health and Care Excellence dementia guidelines based on the evidence that it can improve cognition in people with mild to moderate dementia over and above any medication effects (Binns et al., 2020).
Social Participation and Social Identity
People with dementia describe experiences of loss that threaten their autonomy and ability to contribute to society. They often have difficulties with orientation, loss of role function, and fear about the future, and need help from others.
Many studies have described challenges and sources of stress that people with dementia encounter. They report of loss of autonomy, control, and connection. They see themselves as “different” and no longer normal. Memory problems, other symptoms of dementia, and the unpredictable progression of the disease lead to worry and anxiety (Bjørkløf et al., 2019).
Needs change; the need to be looked after and to be taken care of increases, and new social and emotional needs arise. People report feeling stigmatized, embarrassed, or stupid. Dementia threatens people’s identity and sense of worth and changes their roles and the relationship to others. Taking part in social events and meaningful activities becomes more difficult. Consequently, some feel that they lack competency and may not be contributing as much as they would like, for instance in household and society (Bjørkløf et al., 2019).
A man enjoying a familiar activity. Southeastern Veterans Center by padmva is licensed under CC BY-NC-ND 2.0.
Loss of social contact and meaningful activities lead to loneliness, isolation, emptiness, and boredom and many people feel it is necessary to adjust life expectations. The decline in function and abilities have great impact on daily life and some express that life loses purpose, and that happiness is gone. There is concern for the future and the unpredictable nature of the progression of dementia (Bjørkløf et al., 2019).
Reduced social participation can 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).
Some may try to uphold independent and youthful identities. They frequently emphasize their self-sufficiency, distinguish themselves from “old” people whom they described as dependent and decrepit, and may avoid opportunities for support in case this marked them as old and dependent. Some may avoid social situations that contradict their preferred identities and wish 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. 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. From: http://www.nia.nih.gov/alzheimers/
Talking therapies like Cognitive Behavioral Therapy (CBT) can 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).
The Benefits of Respite Care
Respite care provides short-term relief for primary caregivers. It can be arranged for just an afternoon or for several days or weeks. Care can be provided at home, in a healthcare facility, or at an adult day center. Respite services charge by the hour or by the number of days or weeks that services are provided. Most insurance plans do not cover these costs. You must pay all costs not covered by insurance or other funding sources. Medicare will cover most of the cost of up to 5 days in a row of respite care in a hospital or skilled nursing facility for a person receiving hospice care. Medicaid also may offer assistance (NIA, 2017).
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.
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 underutilized. Some reasons include:
- Caregiver guilt
- Negative beliefs about care-recipient outcomes
- Financial costs of day care services
- Reluctance on the part of the caregiver to hand over responsibility for caregiving to the day care facility (Stirling et al., 2014)
Exercise and Physical Activity
Growing evidence suggests that lifestyle factors have a significant impact on how well non-demented people age, and physical activity may be a protective factor 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 be beneficial in clients already suffering Alzheimer’s dementia, improving clinical symptoms (Holthoff et al., 2015).
Man exercising on an upper extremity bike. Southeastern Veterans Center by padmva is licensed under CC BY-NC-ND 2.0.
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 (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).
Pet therapy visit by K9 Playgroups is licensed under CC BY-NC-ND 2.0.
Animal-assisted therapy is an intervention in which animals meeting specific criteria become an integral part of the treatment process. Animal-assisted therapy improves a person’s mental and physical health. In the area of mental health, it releases an automatic relaxation response, reduces the feeling of anxiety, contributes to the lowering of loneliness, and helps in the recall of memories. In the area of physical health, animal-assisted therapy helps to reduce blood pressure and improves cardiovascular health, decreases the amount of medications, and reduces physical pain (Klimova et al., 2019a).
For individuals with dementia, animal-assisted therapy:
- Contributes to slightly higher physical activity; people can pet the animal, or in better cases, they can go for a walk.
- Relieves so-called sundown syndrome, which manifests itself in increased agitation, restlessness, disorientation, and aggressive behavior.
- Improves short-term memory and communication skills.
- Enhances eating habits.
- Reduces loneliness. (Klimova et al., 2019a)
Intervening Using the Problem-Solving Approach
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 focus 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.
- Antecedent—what caused the behavior?
- Behavior—what is the behavior?
- Consequence—what are the consequences of the 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.