When life’s journey takes a new turn which involves any kind of diagnosis, there is an automatic separation between the individual and their peers. In the case of dementia, this separation probably has been developing as symptoms became more obvious. Gatherings that were once smooth, now can be rough. Sometimes so rough, that the calendar becomes less populated with gatherings. Stigma is real, has been validated in research and is based on the individual’s changed response to a situation, a question, even a word. Care companions find themselves in the difficult spot of needing to learn more, wanting to have someone with whom to share the challenges, but unable to talk about it because their loved one fears the label, the future. The very word dementia is loaded with nuance.
Where does one turn? The neurology group is efficient, sometimes compassionate, but only available for medical changes. Your friends are sympathetic, maybe patronizing but not knowledgeable. Look for these words to guide and provide when there is a dementia diagnosis:
Whatever the form of dementia, there is an association that others have formed to be a resource. Whether it is the Alzheimer’s Association, the Association of Frontotemporal Dementia, the Lewy Body Dementia Association . . . there is an association that includes others who are living with your diagnosis. Consult the internet both through the search tool and through social media. There is power in the word association.
- Support Group
Within the associations, there will be groups of care companions who are living with the same or similar diagnosis. Try many. Not all groups will be right for you and your loved one, but there are enough options that you should be able to find one which is truly supportive for you. You can even participate in online support groups that do not require physical attendance.
The most important word of the three listed here; community represents the ideal. Having a community committed to your success, your health as care companions and your journey. Community stems from support groups, from associations. It is from the community generated in associations and support groups that we are able to be alive with dementia instead of suffering with dementia.
As a long-time dementia advocate, scholar and practitioner, it has been my experience that a memory care community is not merely a residence for placement when a loved one becomes too difficult to care for at home. A memory care community can work with you on your journey from the beginning.
Arden Courts has been that memory care community for families since the late 90’s. Leading in education, support, and outreach to those on the journey.
Match the nuance of dementia with the nuance of association, support group and community.
By-line: Cate McCarty, PhD, ADC has been collaborating with Arden Courts in a variety of roles since the late 90’s. Her background in nursing, activities and admissions has given her a passionate commitment to quality of life for the individual and family with dementia. Cate is now personally caring for her spouse who has an FTD diagnosis.