LIVING the Dementia Journey (LDJ) is an award-winning, evidence-informed training program for those who support people living with dementia. Participants gain awareness and understanding that changes not only the way they view dementia, but the way they support people living with it.
The LDJ program has six core modules. Each explores different ways to support people living with dementia.
LEARNING about the experience of living with dementia:
- Gain a new understanding and perspective of dementia
- Understand how common myths and misunderstandings about dementia impact the approach to care
- Learn about the unique, real-life experiences of people living with dementia
IMPROVING personal well-being:
- Understand that quality of life goes beyond quality of care and activities of daily living
- Learn about the seven domains of well-being and what they mean for each person
- Learn the importance of and strategies for taking care of yourself and others
VALIDATING and honouring each person in the moment:
- Recognize the value of the individual beyond diagnosis and knowing each person
- Understand how people living with dementia perceive and communicate their reality differently
- Learn how your actions and interactions with a person with dementia can have a negative or positive impact
INTERPRETING personal expressions, actions, and reactions:
- Understand that personal expressions (behaviours) having meaning
- Understand what factors trigger personal expressions
- Learn how to problem solve and identify strategies to recognize, interpret and respond to personal expression
NURTURING all relationships:
- Understand the importance of the way you speak and act
- Learn the key ingredients to developing relationships with people whose cognition is changing
- Explore different styles of caring to promote relationships
GREETING each day as an opportunity for meaning, purpose, and growth:
- Understand how to combat the three plagues of long-term care: boredom, loneliness and helplessness
- Learn how to create meaningful experiences and opportunities for growth for people living with dementia
LDJ was developed using the Murray Alzheimer Research and Education Program’s Authentic Partnership approach, which recognizes the important contributions that people living with cognitive changes can make.
- Genuine regard for self and others
- Synergistic relationships where the collective wisdom of the group is seen as richer than the knowledge and skills of any one person
- Focus on the process that allows for supportive modifications and creative responses to issues developed from new learning
- Connect and commit. This enabler joins partners from different backgrounds together, to mutually set partnership goals and guidelines, considering the strengths of all partners involved.
- Create a safe space. This enabler supports the formation of strong relationships, where a safe space is established that is built on trust and where all partners feel comfortable and open, both physically and emotionally, to share their opinions. The space must also be free of distractions and fuel an awareness and sensitivity to any discomfort or frustration felt by the partners.
- Value diverse perspectives. This enabler emphasizes the importance of appreciating and considering all ideas, contributions, and forms of participation within the Authentic Partnership. This enabler also views differences between partners as opportunities to learn and grow from each other.
- Establish and maintain open communication. This enabler builds strong lines of communication and connection within the partnership. It requires partners to use accessible language, clarify meanings, and provide alternative ways of sharing within the partnership, which may include the need for flexibility during meetings, to provide partners extra time to share and communicate.
- Conduct regular reflection and dialogue. This enabler focuses on ongoing check-ins throughout the development of Authentic Partnerships. It promotes the need for personal and group reflection and communication within the partnership, to assess what is going well, what can be improved, and how the partnerships can be strengthened.
In November 2017, LIVING the Dementia Journey was named the Best New Long-Term Care Product or Service of the Year at the Ontario Long Term Care Association (OLTCA)’s Annual Awards Gala.
In 2016, Argentum (a USA senior living leadership association) recognized LIVING the Dementia Journey as a “Breakthrough Innovation that opens new markets and offers new advantages”. The program was acknowledged as an Innovative Education and Training program for staff and teams in memory care.
An evaluation including 1,785 participants found that LIVING the Dementia Journey increased their understanding and awareness of dementia. Participants felt that the program is foundational in positively shifting perceptions and language about dementia.
LIVING the Dementia Journey was co-created in 2013 by the Murray Alzheimer Research and Education Program (MAREP) in partnership with a diverse advisory team comprised of people living with dementia, residents in long-term care homes, family members, staff/team members, and leadership. The advisory team led the development of LIVING the Dementia Journey topics and content.
Schlegel Villages is a key partner that helped to create and pilot the program and partnered with the Schlegel-University of Waterloo Research Institute for Aging (RIA) to evaluate it. RIA and MAREP have teamed up to share the program so that it widely benefits people living with dementia and their care partners across the continuum of care.