Many of us know families living with a dementia diagnosis. Dementia is a group of symptoms rather than a specific disease, so even though we most often hear about Alzheimer’s disease, there are actually over 150 illnesses that can cause the symptoms of dementia. There are those living with an early-onset diagnosis, but most frequently we associate dementia with older adults because the incidence of dementia increases as we get older.
Alzheimer’s disease has been referred to as “The Long Goodbye” because it’s a progressive disease which often takes many years to run its course. Currently, there is no cure. A diagnosis entails an uncertain journey that is characterized by change after change; loss after loss. In the midst of this loss, it can sometimes be difficult to remember that there is still life — life that can be lived well — for many years following diagnosis.
Each person living with a diagnosis is unique, with a unique life history, and different lifestyles or life situations. Their journey with dementia will also be unique to them. But there are also things in common:
- Each person is beloved by God.
- Each person is a gift in the lives of those who love and care for them.
- Each person’s value is not dependent on their health.
- Each person living with any illness is undiminished in the unique essence of their lived experience, and in who they were created to be.
Most of all, it’s so important to recognize that as we journey, there is still room for joy, kindness, smiles, praise, love, thanksgiving, friendship, beauty, wisdom, meaning and presence!
As we journey, there is still room for joy, kindness, smiles, praise, love, thanksgiving, friendship, beauty, wisdom, meaning and presence!
It’s clear that the effects of a diagnosis are far-reaching, impacting family members, friends, and whole communities surrounding the person experiencing the effects of the disease first-hand. It changes relationships in ways that can be difficult to navigate. Family care partners take on unfamiliar roles, and often feel alone and isolated in their journey as they are constantly called upon to adapt.
In this blog, I hope to open a conversation about how churches can seek faithful ways to respond to the needs of families living with dementia. In particular, I hope to offer information and resources to assist churches with providing a structured fellowship program tailored to the needs of people living with a dementia diagnosis. In providing fellowship and meeting the need for social contact, we can also enable care partners to take some personal time for self-care. We are friends and neighbours, and we have the ability to help, especially in the earlier stages when fear of stigma can cause withdrawal into isolation.
Let’s open a conversation about how churches can seek faithful ways to respond to the needs of families living with dementia.
In the coming weeks and months, we will talk more about ways that churches are really well-suited to hosting respite programs. We’ll also look at some of the more practical elements of getting started, such as establishing communication with the families you hope to serve, and providing for safety considerations.
If you are interested in starting a program, please connect with me and let me know what questions you have.
Come with me as we explore ways that faith communities can walk “Side by Side” with families facing the challenges of living with dementia!!
Alice was born and raised in Calgary, Alberta, and has called St. Andrew’s Presbyterian Church in Calgary her church home for as long as she can remember. She has served as the Side by Side Program Coordinator at St. Andrew’s since early in 2013, and is continually amazed by, and grateful for, the loving hearts, willing hands, and the thoughtful, caring kindness she encounters every week at the St. Andrew’s Side by Side program.
God is weaving a tapestry of care
that connects all of us in Grace.
Come. Be part of it.
Let’s build something together.
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