Dementia dossier: the new normal
How innovation and relationships can make a difference to individuals living with cognitive decline
Even if you saw it coming, hearing your loved one’s official dementia diagnosis can pull all the air out of the room. Nothing will ever be the same. The person you know and love’s path has now become decidedly uncertain.
The new normal. Abrupt shifts are rarely a comfortable experience, but the change in conversation from Sunday dinner plans to maintaining independence, a move from the family home, and caregiver options can feel jarring. This is a time that often introduces more questions than answers.
“How long do we have? What can we do? How do we stop it? What’s going to happen to my intelligent, vibrant, active mom?”
While there’s no cure for a dementia diagnosis, the diagnosis itself isn’t a switch that changes someone suddenly from the vibrant individual you know and love to a stranger you struggle to connect with. The new (and ever-changing) normal does mean significant changes will need to be addressed and anticipated. But with a supportive network and some adjustments, the new normal can be less abrupt, and more fulfilling for you and your loved one than you might think.
Innovation in aging comes from within
From the very start, Jamie Fewchuk discovered passion and purpose working in seniors’ communities, starting as a teenager and working her way through Laurentian University to earn a Bachelor of Science in Nursing. Her first role at United was Resident Care Manager, and her efforts and dedication to older adult wellness has guided her to a new role as United’s Director of Innovation in Aging — a role that she is forging to advocate for and cultivate the potential of those living with dementia. At United Active Living this means an approach focused on maintaining independence as long as possible paired with the benefits of an integrated, socially connected community that focused on strengths and abilities, rather than solely on a medical diagnosis.
“The traditional way of viewing aging and dementia can limit possibilities and often creates division between the people who need connection the most,” Jamie shares. “As we age, we experience loss at a greater rate. We often don’t have control over the losses we endure, but we can have some influence on connections we make. Connection is the gateway to many things. It can lead to a sense of purpose, reinforce one’s identity, create joy, and ultimately make a person feel valued.”
Connection can be medicine for the soul
Often, it can be difficult to see a person’s true self after they have been diagnosed. It’s easy to see someone with dementia as a person who has lost themselves, which can make building and maintaining a relationship with the individual feel challenging and frustrating.
Despite these challenges, establishing personal, meaningful connections is essential for the well-being of people living with dementia. Relationships can preserve an inner sense of self (the feeling of who you are as an individual), and provide purpose, a sense of security, and happiness. In fact, research suggests losing relationships and meaningful connections is a major contributing factor in the rate of progression of cognitive decline for individuals.
Here are five factors that contribute to building and maintaining relationships with people living with dementia:
- Initiative: Dementia can affect a person’s ability to communicate, making them feel overwhelmed and hesitant to reach out. That’s why it’s essential for loved ones, peers, and care partners to take initiative and actively encourage the individual to overcome their apprehension of connecting with others.
- Presence: Time is the greatest gift we can give to our loved ones or peers living with dementia. Devoting time to connect and to learn about their history, interests, and desires is another way to communicate, ‘I have time for you’, and fosters a profound sense of purpose and self-worth for that person. Your gift of time enhances the overall quality of any interaction, creating a genuine and impactful connection.
- Security and trust: Feeling overwhelmed and unheard is common for those experiencing symptoms of dementia. A person experiencing dementia has feelings of fear, frustration, sadness, overstimulation, and anger – just as you do. As family members or care partners, we may have particular plans or expectations of that person, however, it’s important to understand cognitive decline can often present symptoms that alter the reality of the individual. As a result, they may not understand or want what is expected of them. It’s essential to be empathetic and adapt and adjust your expectations based on their needs and feelings. Respect and validation, coupled with flexibility, builds a foundation of trust and security. At United, we teach our team members the ‘validation’ technique. Learn more here: https://vfvalidation.org/resources/types/video/
- Equality in relationships: Careful consideration and awareness of power dynamics in relationships are crucial to prevent unintended consequences of infantilization (treating an adult like a child or baby). Finding opportunities for residents to actively participate in relationships by providing opportunities to make their own choices, share their knowledge and life experience, and participate in hands-on involvement, not only acknowledges their capabilities but also significantly enriches the quality of the relationship.
- Self-care is important too: More often than not, those who have assumed the role of care partner or decision-maker on behalf of a loved one forget or ignore their own needs. Often, we take on the role of care partner in addition to our other duties, juggling work, parenting, coaching, home maintenance, and all of the other stressors of daily life. So, while this point is last on the list, it’s certainly amongst the highest priority for someone fulfilling the role of care partner long-term.
The role of care partners
In Canada, friends and family provide more than 470 million cumulative hours each year to their loved ones, averaging 26 hours of care per week for a care partner. That time is often spent in doctor’s offices, coordinating care, and otherwise looking after the immediate necessaries of life, leaving little room to connect on a personal level, and often causing stress in the care partners’ other interpersonal relationships.
Peer support for care partners is a highly beneficial resource offered at United, allowing care partners a space to build their own network of support, and connect over common experiences with others in similar situations.
“Stepping into the role of care partner is an important but often thankless job,” Jamie says. “Caring for care partners starts with peer support. Not only does a person living with dementia benefit from these efforts to forge relationships, but care partners can also benefit through an expanded social circle. Such networks can help care partners more successfully navigate the challenges of supporting someone living with a dementia diagnosis and even learn new strategies for connecting with their loved one.”
The next innovation: collaboration
In the older adult care industry, caring for the care partner is a relatively new concept of focus for family support members. United is leading the way with intentional relationship building and collaboration – not only with residents, but with care partners and peer support groups as well. United Minds services provide families with a dependable support system and compassionate shoulder to lean on, giving family members the confidence to a maintain normalcy in the relationship with their loved one.
United Minds relationship-centred approach goes beyond focusing on those with a cognitive impairment, and aims to create a community where all residents are empowered to keep their minds and bodies active, building cognitive resilience while feeling fulfilled and engaged as a valuable member of the community.
A journey, not a destination
“Brain health isn’t only for those living with dementia. As we age, we are all at greater risk of developing cognitive impairments, and individuals can feel confident that they will be treated with dignity and respect regardless of their cognitive status,” Jamie says. “Each individual, in collaboration with their families and care partners, United Minds Aides, and their medical supervisors can work together to ensure the best possible outcomes. Being part of a community is the first step to creating a new normal that may be different, but can still be rich with potential and possibility.”
When you’ve had the chance to catch your breath, take a moment to acknowledge the journey you and your loved one are on. Inevitably, there will be bumps along the way. However, it’s still possible to share special moments and find meaningful connection. And with the right community and network of support, your loved one can learn new things, stay active and socially connected, live with purpose, and enjoy the journey.