Basic Core Competencies for Working with or Interacting with Persons Living with Dementia and Their Care Partners

• Providers, care partners, and anyone involved in the support of PLWD
• Additional competencies will likely be needed for various professions
• Some specific professions may have additional competencies defined

• To inform direct service delivery and to promote best practices
• To serve as a resource in developing worker training and performance improvement practices for direct care workers (DCW)
• To recognize the basic minimum set of competencies needed for DCW to improve direct support practice
• To reflect the specific needs of people supported in community-based long-term services and supports
• To promote diversity, equity, and inclusion in the ecosystem supporting PLWD across Illinois

Understanding Alzheimer’s disease and related dementias, their effects on brain function, and resultant symptoms is essential to the provision of quality person-centered care.

• Define dementia and identify the common causes, including but not limited to Alzheimer’s disease, Lewy body dementia, vascular dementia, and frontotemporal dementia
• Explain how dementia, over time, may progressively impair all functions of the brain, including, but not limited to memory, attention, language, visuospatial functioning, decision-making, and personality
• Describe the differences among normal aging, mild cognitive impairment, and dementia due to Alzheimer’s disease and other dementias
• Describe how dementia affects care partners, family, social networks, and diverse communities

Person-centered care considers the whole person, taking into account each individual's unique qualities, abilities, interests, preferences, and needs; and treating PLWD with dignity and respect. PLWD have a right to maximize quality of life, including the least restrictive setting that optimizes their strengths and abilities. Living with dementia can be an isolating experience. Individuals who directly work with PLWD need to recognize their role in reducing social and environmental factors that have a negative impact. Person-centered care recognizes the human value and individuality (unique personality and life experiences) of all, both the person living with dementia and those working with them. At the core of “person-centered care” are the relationships developed.

• Describe person-centered care and how it promotes and maintains independence, minimizes frustration, fosters feelings of comfort and security, and promotes diversity, equity, and inclusion
• Describe how knowing a person’s background, culture, and experiences can affect care, including promoting continued purposeful and meaningful activities
• Describe an awareness of how background, culture, experiences, and attitudes of individuals directly working with or interacting with PLWD can affect care and support a culture of diversity, equity, and inclusion
• Recognize PLWD and care partners as part of the caregiving team, if able and willing to participate. PLWD should make informed decisions about care and treatment, including completion of advance directives
• Define who may be involved in a caregiving team beyond PLWD and care partners as part of a broader dementia
• capable Illinois
• Recognize that in many cases, the family of the PLWD may be maximally stressed by the caregiving needs and behavioral problems of the PLWD

Dementia often changes how a person is able to communicate, both in what is said and in what is understood. Individuals that directly work with or interact with PLWD need to understand how they can assist in this communication.

• Demonstrate effective ways of listening and communicating with PLWD, both verbal and non-verbally
• Collect and use information about the individual’s personal history, religious and spiritual preferences, and cultural and ethnic background
• Provide PLWD and/or their care partners with information in the preferred language and/or in an accessible format using an impartial interpreter in the preferred language
• Support care coordination and communication among multidisciplinary providers to enhance the care experience for PLWD and care partners

The behaviors of PLWD are an indication of an emotional condition and therefore, may be a form of communication by PLWD. Health care workers need to understand how to assess the behaviors and emotional state of PLWD. Many behaviors may be modified by altering the approach to the person and/or the environment. PLWD may exhibit challenging and uncharacteristic behaviors. Behaviors may include aggression, agitation, wandering, hoarding, sexual disinhibition, apathy, and disruptive vocal activity, such as shouting.

• Discuss how the behavior of PLWD may be a form of communication. Behaviors may reflect emotions or unmet needs.
• Identify, monitor, and address environmental, physical health, medical and psychosocial factors that influence behaviors. This can include violence and aggression, and the risk of harm to self or others.
• Recognize a change in behavior may be due to medications or delirium and a discussion with staff may be needed.
• Explain how to defuse, redirect, and distract PLWD during stressful situations.
• Recognize that a person with dementia may lack insight about their own behavior.
• Describe ways to tailor interventions to the person's preferences, skills, and abilities.

Safety issues can be a concern for PLWD and their care partners. These risks can include wandering, misuse of medications, daily care, and navigating through life. Safety concerns can also include risk of exploitation and abuse. Individuals who care for PLWD should identify, monitor, and address environmental, physical health, and psychosocial factors that may increase safety risks.

• Identify and address the safety needs of PLWD, care partners, and others in the surrounding environment
• Discuss how a person’s surroundings may affect safety
• Understand why PLWD may be more vulnerable to abuse and to neglect
• Demonstrate the ability to identify, prevent, and report situations of abuse, exploitation, and neglect
• Describe state and federal laws that require reporting of abuse and neglect

Care for PLWD should incorporate a palliative care approach. Palliative care means patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice.

• Describe the palliative care approach throughout the entire disease process
• Identify the stages of grief for PLWD and care partners, and associated behaviors during each stage
• Identify how cultural and family differences influence the treatment choices and dying process
• Describe the physical and emotional aspects of the treatment choices and dying process
• Explain how PLWD and multiple care partners’ goals for care may differ and change over time

Last Updated: 12/01/2021