By Jisan Phillips and Kristin Grant

The prevalence of dementia is increasing across the globe, with projections of the diagnosis estimated to reach 115 million people by the year 2050. A dementia diagnosis encompasses a variety of incurable, neurodegenerative conditions (e.g., Alzheimer’s, vascular dementia) which influence a person’s cognitive functioning, language, self-help skills, and more. The impact of dementia can be exhibited in various ways, including the decline of a person’s cognitive, motor, and verbal skills, as well as an increase in challenging behaviours.

A dementia diagnosis is typically life altering for the person with dementia, as well as their loved ones. In response to this diagnosis, the Alzheimer’s Association in Canada and the United States endorse a philosophy of person-centred care, with the first guiding principle (in the Canadian division) being ‘personhood’. ‘Personhood’ is defined as “a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. Personhood implies recognition, respect, and trust.” Ultimately, a model of person-centred care recognizes all individuals as people who extend beyond their disease or disability (i.e., a person with dementia is not exclusively a patient). This care philosophy also recognizes and values individuals’ preferences in relation to the type of care they do/do not receive.

In order to manage many of the symptoms associated with dementia (including challenging behaviours), patients and families often reach out to trusted medical professionals, where evidence-based medical practices, including pharmacological interventions, may be proposed. The types of treatments proposed by clinicians sometimes align with the “medical model” approach to care. A medical model of care prioritizes a patient’s pharmacological needs as the primary treatment approach, which frequently results in diminishing skills or ignoring the patient’s current level of abilities and challenges. Consequently, the autonomy of the person receiving care is not at the forefront. A medical model approach to care (e.g., responding to various symptoms via pharmacological intervention) is often essential to meeting the needs of and treating symptoms associated with dementia; pharmacological interventions should be proposed for patients and/or their substitute decision-makers if clinically indicated. However, an important part of providing person-centered care and enabling patients to make fully informed care decisions is to ensure that their values and preferences are considered, and that all available, evidence-based, and clinically indicated interventions are explored accordingly.

Based on our experiences, a primary allied health approach to care, which involves various professional disciplines, such as occupational therapists and recreational therapists (who have fought to establish a foothold within gerontological care), can help to promote a person-centred approach to care, extending beyond an exclusive medical model. An allied health approach to caring for people with dementia provides patients and families with various options to explore for symptom management, which aligns with person-centredness. However, one evidence-based approach to the management of challenging behaviours (in particular) for people with dementia, which is seldom proposed, is that of applied behavioural analysis (ABA). Applied Behaviour Analysis (ABA) is the science of behaviour, which functions based on a person-centered approach to care and emphasizes the need to establish social validity and individualization to treatment. Social validity is at the heart of ABA. Social validity focuses on: (1) the social significance of the goals of treatment; (2) the social appropriateness of the treatment procedures; and (3) the social importance of the effects of treatments. For example, suppose a dementia patient transitions into a long-term care facility with their cognitive abilities very much intact, while their motor abilities have diminished and require support. This patient expresses a desire to have medications be a last resort. In this case, a treatment approach that prioritizes minimal pharmacological treatment yields a socially valid approach to care. This example encompasses social validity from an ABA lens as it prioritizes the wishes of the patient, and appropriately supports their autonomy. When you consider that social validity to treatment is a core dimension of ABA practitioners, it is evident that ABA fits in with a person-centered approach to care; ABA provides an individual approach to treatment and care.

In addition to establishing social validity as part of an individualized approach to treatment, learned dependency is one area where ABA has demonstrated effectiveness in reducing or minimizing acquired helpless and promoting person-centredness. Learned dependency is a challenge faced by many seniors, with and without dementia, who transition from family or community dwellings into long-term care and nursing facilities. It occurs when skills that are still within their abilities are lost due to staff and caregivers doing tasks for them. For example, it can take less time for a staff member to complete daily hygiene than giving a patient the opportunity to complete their hygiene independently. This grows the problem of learned dependency as patients’ skills are lost and they become more dependent on having assistance provided. By developing individualized behavioural treatment goals, behaviour analysts aim to maintain a patient’s independence as long as possible with the systematic application or withdrawal of supports (primarily daily living and self-help skills) to minimize the acquisition of learned dependency. Maintaining skills and/or relearning skills (e.g. self-help and daily living skills), learning new skills (e.g. medication compliance) and reducing challenging behaviours (aggression to self or others) maintains a person with dementia’s autonomy and promotes person-centred care. Every patient with dementia has unique interests, passions, and personalities. And because every patient with dementia is uniquely affected by their diagnosis, each person requires treatment and care that is individualized according to their wants and needs, strengths, and challenges. Each of the allied health professionals in their discipline have the same goals – to maintain a patient’s independence, choices, and quality of life.

Ultimately, dementia diagnoses are increasing, and responding to symptoms associated with dementia in a person-centered manner is essential. Having a behaviour analyst as part of an allied health team can support other professional disciplines by individualizing treatment goals, collection of data, and graphing on progress of skills. Moreover, behaviour analysts have unique skill sets to develop behaviour specific supports to address challenging behaviour, verbal skills, motor skills and self-help skills.

As advancements of evidence-based approaches are established as effective, including behaviour analysis, these options must be considered as part of a person-centred approach to dementia care. Reliance on a medical model approach to dementia treatment and care ignores the benefits of other available evidence-based treatment options for dementia patients, their families, and care team. Ensuring that dementia patients and their families have choices in treatment is a valued, ethical approach to care in any allied health care team.

Jisan Phillips, M.ADS., BCBA is a Professor in the Honours Bachelor of Behaviour Analysis program at George Brown College and the Manager of Autism Services at Surrey Place. Kristin Grant recently completed her Honours Bachelor of Behaviour Analysis at George Brown College and is commencing her Masters in Disability Studies at Brock University in September 2022.