The 10 Commandments of Support and Care for People Living With Dementia:
1. Persistent commitment to the endless journey of person-directed care (as opposed to bio-medical / psychiatric model of care).
2. The quality of care is a direct result of the level of support and education received by family and professional care partners.
3. Close trusting relationship is the #1 key to compassionate and effective care. Know the early-life history of the person and use this knowledge regularly and thoughtfully during your interactions with her/him. Link to my piece: Why we want to know the early life history of older people with dementia – 20 Reasons – Eilon Caspi – May 27 2016
4. Engage the person in enriching, personally meaningful, appropriate, frustration-free, and culturally-specific activities. The activities need to be designed for adults, not children.
5. Behavioral expressions such as rejection of care and distressing and harmful resident-to-resident interactions are one of the most challenging aspects of care. Understanding the “meaning of the sequence of events” (Professor Jiska Cohen-Mansfield) and the situational triggers leading to their expression is key to their prevention. Structured and systematic documentation of the circumstances leading to behavioral expressions is critical to development of effective individualized interventions. Use of a Behavioral Expressions Log is critical.
6. The primary goal of care of people living with dementia is to preserve their personhood” (Professor Tom Kitwood) and “to bring about a positive emotion and to maintain that emotional state over the course of the day” (Dr. Paul Raia). Focus on the person’s remaining abilities / persisting assets. Remaining_Abilities_in_Older_Persons_with_Alzheimer’s_Disease_Jan_19_2014
Understand the functional and cognitive disabilities and proactively compensate for them in an anticipatory way.
7. The characteristics of the person’s physical environment are critical to providing effective care and preventing various forms of distressing and harmful behavioral expressions and increasing the likelihood that the person will remain safe. The physical environment needs to be personalized and familiar to the person and be elder-friendly and dementia friendly.
8. The role of language. The words we use when we interact with people with dementia are critical for preserving their dignity and avoiding excess disability. Suggested terms include “Behavioral Expressions,” “Expressive Behaviors,” Reactive Behaviors,” and “Responsive Behaviors.”
9. Care should be guided by the principles of Habilitation Therapy/Model of Care (Dr. Paul Raia & Joanne Koenig Coste), Validation Method (Naomi Feil and Vicki de Klerk Rubin), the Need-Driven Dementia Compromised Behavior Model (Prof. Donna Algase), and the Progressively-Lowered Stress Threshold Model (Prof. Marianne Smith).
Click here for a 1-page Handout on Habilitation Model of Care
10. It is unlikely that there will be a tolerable cure for Alzheimer’s disease in the near future (Dr. Bill Thomas; Dr. Allen Power; Dr. Peter Whitehouse; Prof. Margaret Lock; Dr. Ronald DeVere) so start “prescribing” humane person-directed care using evidence-based psychosocial approaches and strategies.
“There is not going to be a magic bullet coming anytime soon” – Dr. Allen Power (2011), author of the groundbreaking books Dementia Beyond Drugs and Dementia Beyond Disease.
Assist the person to re-connect with nature, gardening, children, trained pets, listening and singing to favorite old music, dancing, exercising, doing art work, visiting museums (e.g., The MoMA Alzheimer’s Project) , watching favorite films (e.g. Meet me at the Movies program) aromatherapy, participating on Care Farms, and engaging in spiritual activities. Engagement of people with dementia in each of these and other activities must be planned and delivered based on the person’s preferences, abilities, and disabilities. Enable the person to live their lives to the fullest and thrive despite substantial cognitive disabilities.
Most importantly, please consider advocating for shifting the balance of funding from the current predominant focus on biomedical research and cure to psychosocial research and development and evaluation of dementia-friendly services, programs, education, support systems for people living with dementia and their family and paid care partners as well as for campaigns aimed at reduction of the harmful stigma commonly associated with living with dementia.
For more information, you are invited to read my article:
Caspi, E. (2017). Trust at stake: Is the “dual mission” of the U.S. Alzheimer’s Association out of balance? Dementia: The International Journal of Social Research and Practice.
Link to Abstract: http://journals.sagepub.com/doi/abs/10.1177/1471301217719789