Neuropsychologist Diana Carolina Gómez Blanco demonstrates how non-pharmacological interventions can be a key tool for managing psychological and behavioral symptoms in people with dementia.
“A person with dementia lives in a present where things disappear, explanations are forgotten, and conversations lose meaning, where love is the only alternative.”
In recent years, the increase in the elderly population worldwide has led to a higher incidence in the detection of neurocognitive disorders such as dementias.
This increase in incidence has encouraged research into both prevention and treatment, addressing not only cognitive symptoms but also psychological and behavioral symptoms, which can strain families and healthcare systems as they exacerbate cognitive and functional deterioration. These symptoms not only cause suffering for patients and their caregivers but also increase the risk of institutionalization, reduce the quality of life for both patients and their families, elevate stress levels for caregivers and nursing staff, and generate higher financial costs.
What are the Psychological and Behavioral Symptoms of Dementia (PBSD)
The psychological and behavioral symptoms of dementia (PBSD) refer to a set of symptoms and signs that include psychiatric symptoms and behavioral problems that can appear in people with dementia. These symptoms can manifest at almost any stage of the illness, with highly variable patterns influenced by modifiable psychological and environmental factors that offer treatment opportunities (Olazarán-Rodríguez & Agüera-Ortiz, 2012, p 598).
The more complex and mentally elaborated psychological symptoms are identified through interviews with the patient and family, such as depression, anxiety, or psychosis. Behavioral symptoms, on the other hand, are observed directly, such as aggression, motor hyperactivity, or disinhibition.
The psychological and behavioral symptoms of dementia (PBSD) are highly prevalent, with multiple factors identified in their genesis resulting from a complex interaction of biological, psychological, social, and environmental factors affecting a biologically predisposed individual.
Among these factors are frontal or other brain area dysfunction, neurotransmitter alterations, and the patient’s prior personality, as the loss of cognitive abilities often reveals the most basic personality traits.
Similarly, stressful life events or those the patient cannot process, the loss of relationships, or other relevant stimuli, activities, or functions, and unmet basic biological or psychological needs can trigger symptoms.
In addition, paternalistic, authoritarian, or infantilizing behavior, exasperation, ignoring the patient, imposing actions or power struggles, or frequently asking the same questions to make the patient remember can be behaviors exhibited by caregivers that may create or perpetuate the behavioral symptoms of dementia (PBSD).
PBSD are categorized into psychological symptoms and behavioral symptoms.
Psychological symptoms
Among the psychological symptoms of dementia are delusions with a prevalence of 10% to 73%, with persecutory delusions being the most common. These are followed by hallucinations, with a 12% to 49% prevalence, with visions being the most frequent.
Other symptoms include misidentifications, with a 16% prevalence among patients with Alzheimer’s disease. Additionally, depression, anxiety, and apathy are also common. Apathy, in particular, is one of the most common symptoms, with a 50% prevalence.
Behavioral symptoms
Among the behavioral symptoms are wandering or roaming (one of the most problematic), agitation/aggression, resistance to care, inappropriate sexual behaviors, and catastrophic reactions such as anger or verbal and physical aggression. The presence of each symptom can vary by dementia subtype, though each patient may exhibit various symptoms, even if they are not characteristic of their dementia type (Pérez Romero, 2018, p.379).
It is important to address these symptoms. Below are some of the most common (Fundación Alzheimer Catalunya, 2022):
Mood disorders
- Depression: Persistent feelings of sadness, hopelessness, or a sense of being a burden. It may cause changes in eating, fatigue, and other psychological and behavioral symptoms of dementia (PBSD) such as apathy or loss of functionality.
- Apathy: Disconnection from the surroundings. Lack of interest in activities, with little or no emotional expression.
- Anxiety: Distress usually caused by a feeling of loss of control in everyday situations.
- Aggression: Verbal or physical, causing distress to those around. Unjustified resistance to receiving help.
- Disinhibition: Loss of restraint or modesty in verbal or bodily expressions, which can lead to behavior considered sexually inappropriate.
Vegetative disorders
- Sleep: Sleep cycle disruptions. Sleeping during the day and waking at night, insomnia, fragmented sleep, etc.
- Eating: Increased or decreased appetite.
Perceptual disorders
- Delusions: Beliefs or thoughts that do not correspond to reality.
- Hallucinations: Experiencing sensations and events that are not real, without being able to discern reality from fiction.
Motor activity disorders
- Motor hyperactivity. Moving without apparent reason, which can lead to wandering.
Guidelines for managing Psychological and Behavioral Symptoms of Dementia (PBSD)
Initial management of Psychological and Behavioral Symptoms of Dementia (PBSD)
These symptoms present a clear challenge when intervening and providing necessary guidance to families. Therefore, initial management of psychological and behavioral symptoms of dementia (PBSD) should be based on understanding the underlying biological processes, adopting the patient’s perspective, identifying and modifying triggering factors, and fostering an approach that restores trust and a sense of control.
It is also essential to explain the origins of these symptoms to families and to inform them that complete elimination is not always possible. Sometimes, it is enough to reduce the frequency or intensity of the symptoms, always prioritizing the patient’s well-being.
Likewise, just as it is important to know what to do, it is valuable to know what to avoid. PBSD often do not pose an immediate risk or danger to the person or their family and may serve as a way to cope with the illness, as with repetitive questions. Sometimes these are personal reactions that should be respected, so accompanying or respecting solitude can be the best approach in certain situations.
General Guidelines for Managing the Psychological and Behavioral Symptoms of Dementia (PBSD)
Before discussing possible treatments for PBSD, it is important to mention some general guidelines to consider when managing these symptoms:
- Disturbed Thinking: Familiar environment; avoid triggers; redirect or distract to other topics; do not argue, joke, reinforce, or increase the content of the disturbed thoughts.
- Delusions and Hallucinations: Similar to the above.
- Aggression: Respect premorbid preferences, promote autonomy and privacy, approach directly, use non-verbal language, alert, explain, negotiate, and reinforce cooperation; avoid actions that could undermine the patient’s dignity (e.g., changing diapers insensitively, leaving the bathroom door open, talking about them as if they’re not there…). For specific issues, delve into personal history and conduct a thorough analysis of triggers (e.g., if the shower stream causes irritation, we could interpose a hand to soften water contact with the skin).
- Depression: Identify possible triggers (admission to a facility, spouse’s death, etc.) and modify them when possible (e.g., change rooms if other residents’ advanced deterioration triggers depression); slightly brighter lighting, open and pleasant spaces, social interaction, conversation, enjoyable activities (walks, games, etc.), recalling past pleasant or successful experiences.
- Anxiety: Reduce stimuli; provide continuous explanations of what’s happening; avoid new situations; provide distractions; offer verbal and non-verbal reassurance; in mild dementia, cognitive restructuring (e.g., learning to trust the caregiver).
- Euphoria: Do not mimic or reinforce the patient, do not trivialize; encourage them to see others’ perspectives; correct or offer respect and affection.
- Apathy: Verbal or physical prompting; imitation (group activities), modeling; stimuli with movement and affective components (music, animals, etc.); propose or persuade participation in highly enjoyable activities, error-free; help the caregiver understand and accept the symptom.
- Disinhibition: Investigate possible triggers (removing clothing may be due to heat or an irritating tag); physical activity, fun activities, social contact; respect, humor, flexibility; avoid judging, reinforcing, or trivializing; understand behavior in the context of the disease; teach others to live with symptoms; limit restraint to protecting the dignity of all involved.
- Irritability: Cognitive restructuring in mild dementia (accept limitations, find alternative and realistic activities, etc.); environmental study and modification (noise, social setting, caregiver’s approach, etc.).
- Motor Hyperactivity: Safe footwear and spaces, constant monitoring; walk alongside and guide; allow activity, provide objects to handle; avoid attempting to stop them.
- Repetitive Vocalizations: Check basic needs with special attention to social isolation, lack or excess of stimuli (e.g., noise), and pain; reinforce calm moments (touch, holding hands, small talk, etc.).
- Sleep Disturbance: Activities, lighting, diet, reduced napping, delayed bedtime, avoiding nighttime noise or stimuli.
- Increased Appetite: Reduce or avoid exposure to food or substances.
- Decreased Appetite: Food and environment according to premorbid preferences; enhance culinary aromas, flavors, and food presentation; dental hygiene, tongue plaque cleaning; gradual assistance (start with verbal prompting); conversation during meals.
Treatment of Psychological and Behavioral Symptoms of Dementia (PBSD)
In this regard, it is important to clarify how families and professionals can treat these symptoms.
Pharmacological Treatment of PBSD
In the case of pharmacological treatments, they are sometimes prioritized due to pressure from family members or professional caregivers due to the stress caused by the psychological and behavioral problems of dementia. As a result, medications are often offered as an immediate solution to these issues.
However, this treatment should be framed within a series of considerations and fundamental principles. First, it should be verified that there is no contraindication or intolerance from the patient, and the side effects should be taken into account. Similarly, it is important to remember that certain psychological and behavioral symptoms of dementia (PBSD) have a limited course and may disappear over time. For this reason, it is crucial to:
- Weigh the risks and benefits; regularly review the need for its administration, progressively reducing the doses to check if they are still useful;
- as well as personalize the treatment to each individual patient, considering their physical comorbidity, concurrent treatments, and adverse effect profile.
Pharmacological treatments should not be considered as the first option or the only response in the treatment of PBSD. Instead, general intervention strategies or the use of non-pharmacological therapies should be exhausted first, providing a better quality of life to the patient.
Non-Pharmacological Treatment of PBSD
Non-pharmacological therapies are defined as a non-chemical, theoretically supported, focused, and replicable intervention, performed on the patient or caregiver, and potentially capable of obtaining a relevant benefit. It represents a varied set of strategies and interventions aimed at stimulating cognitive and functional abilities, but also helping to reduce PBSD.
The most common non-pharmacological therapies include:
- Cognitive stimulation,
- Activities of daily living,
- Gerontogymnastics,
- Art therapy,
- Music therapy,
- Behavioral intervention,
- Training for the professional caregiver of the person with dementia,
- Caregiver education,
- Validation therapy,
- Laughter therapy,
- Therapy with dolls,
- Snoezelen sensory stimulation.
Although many more exist, and certainly others will be developed in the future. Olazarán et al., in a systematic review of the available literature on non-pharmacological therapies (NPTs), state that “NPTs can realistically and affordably contribute to the improvement and management of care in Alzheimer’s disease (both for patients and caregivers). Unlike drugs, non-pharmacological interventions are usually low-cost, with the expenditure focused on human resources, rather than on expensive technologies or drugs” (Olazarán et al, 2010, p.171).
Non-pharmacological therapies (NPTs) can be patient-oriented, caregiver-oriented, or professional caregiver-oriented. “Complementary therapies based on physical activity and rehabilitation, cognitive stimulation, and occupational therapy with music, animals, and art, applied and maintained over time, are an alternative that, when well combined or used individually, are effective in preventing, halting, and slowing down Alzheimer’s disease symptoms, especially in the early stages”” (Ruiz-Hernández et al, 2023, p.18).
Conclusion
Thus, while this article falls short of expressing all the benefits of non-pharmacological therapies (NPTs) in addressing psychological and behavioral symptoms of dementia (PBSD), it is possible to affirm that satisfying the patient’s basic needs, adapting the environment, caregiver training, and continuous support and guidance to patients are powerful tools for preventing their appearance.
Once these symptoms appear, the first response should not be pharmacological. Instead, it should be to identify the primary or destabilizing symptoms and intervene accordingly.
Thus, in real life, managing the psychological and behavioral symptoms of dementia largely depends on the ability and willingness of the caregiver and institutions to collaborate on environmental measures, implementing stimulation programs, and utilizing non-pharmacological therapies. Medications should be used within a care plan designed, evaluated, and personalized by a multidisciplinary team, preventing unwanted complications and ultimately leading to a better quality of life for the patient.
Bibliography
- Alzheimer Catalunya Foundation. (2022, July 4). What are the psychological and behavioral symptoms of dementias? Alzheimer Catalunya. Retrieved October 15, 2024, from https://alzheimercatalunya.org/en/what-are-the-psychological-and-behavioral-symptoms-of-dementias/
- Olazarán, J. (2010). Effectiveness of non-pharmacological therapies in Alzheimer’s disease: a systematic review. Dement Geriatr Cogn Disord, 30(1), 161-178. DOI: 10.1159/000321458
- Olazarán-Rodríguez, J., & Agüera-Ortiz, L. F. (2012). Psychological and behavioral symptoms of dementia: prevention, diagnosis, and treatment. Revista de neurología, 55(10), 598-608. https://mariawolff.org/wp-content/uploads/documentos/olazaran.pdf
- Pérez Romero, A. (2018). The importance of psychological and behavioral symptoms (PBSD) in Alzheimer’s disease. Revista Neurología, 33(6), 378-384. Elsevier. DOI: 10.1016/j.nrl.2016.02.024
- Ruíz-Hernández M, Mur-Gomar R, Montejano-Lozoya R. Effectiveness of non-pharmacological therapies in people with Alzheimer’s: a systematic review. Rev Esp Salud Pública. 2023; 97: 18 de octubre e202310086
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