Every three seconds, someone in the world develops dementia. With over 6 million people living with the condition in the U.S. and 57 million globally, these figures are predicted to double by 2060. The experience is profoundly challenging, not only due to the symptoms but also because of the social stigma that often leads to anxiety, depression, and isolation.
The Impact of Stigma on Self-Worth
Dementia-related stigma is frequently perpetuated by media portrayals of people with the condition as incapable, as well as through daily interactions where individuals are dismissed or dehumanised. These forms of invalidation, though often unintentional, accelerate the loss of self-worth and identity that patients already face.
R. Amanda Cooper, an assistant professor of communication and social scientist, argues that educating the public and spreading awareness can help reduce these damaging behaviours. Her research in interpersonal communication and family caregiving highlights that supporting self-worth is often achieved through daily conversations.
Understanding Dementia and Person-Centred Care
Dementia is an umbrella term for conditions involving memory loss, difficulty thinking, changes in communication, and challenges with daily tasks. Alzheimer's disease is the most common form, and most types are progressive, with symptoms worsening over several years.
In the 1990s, psychologist Tom Kitwood introduced the concept of 'personhood' and a new model of person-centred care. This approach focuses on providing comfort, attachment, inclusion, occupation, and identity, contrasting sharply with the older medical model. Kitwood's work underscores that communication is central to upholding a person's sense of self.
Practical Communication Strategies for Families
Researchers have identified several evidence-based strategies to support person-centred care within families and care settings:
- Arrange the environment for conversation: Choose quiet spaces, sit at eye level, and use gestures.
- Acknowledge their unique identity: Use their name, reminisce about their past, and discuss their accomplishments.
- Affirm their emotions: Avoid correcting them and instead validate their feelings.
- Seek their input on care: Use simple yes/no questions and ask permission before assisting with physical tasks.
- Use simple prompts: Rephrase questions, paraphrase responses, and pause to allow time for thought.
- Create connection: Share activities like games or music, express love, and laugh together.
Even in late stages, research shows people with dementia can understand tone of voice and nonverbal cues like body language and gentle touch, enabling meaningful social connections.
Adapting Communication as Dementia Progresses
Supporting personhood requires adjusting communication strategies to match the person's current abilities. A recent study found that asking someone in the early stages to recall the past could be affirming, but the same approach could cause frustration for someone in later stages. Similarly, offering word prompts may help later on but can feel demeaning to those in earlier stages who can still find words independently.
Providing more help than needed can lead to social withdrawal, whereas appropriately matching communication style to capability can empower continued engagement. Finding this 'communication sweet spot' is key to helping a loved one maintain a sense of personal worth and meaningful connection with others.
