“Not everything that is faced can be changed, but nothing can be changed until it is faced.” – James Baldwin
When we are met with a dementia diagnosis, one that robs an individual of his or her brain, how do we face this unknown with acceptance, courage and intentionally helpful practices? What do we do as health care providers? Friends of people with dementia and their families? Community members?
● Do we do nothing? Look the other way?
● Do we accept the problem as belonging just to the elderly?
● Do we jump to the ending – because we know the diagnosis ends in death – ignoring quality of life, guidance, and mental health to support the well-being of the living patients and their families?
● Do we allow ourselves to feel or live in shame because we or someone we know has dementia?
Reflecting on the journey we are traveling with our loved ones, here are some thoughts on discrimination from caregivers in the Durango Dementia Coalition.
With a heart attack, there is a treatment protocol in the hospital, referral to cardiac care, an outfitted gym and follow-up up support. Diabetes is diagnosed with protocols for treatment, a diabetic clinic, teaching and follow-up. With cancer, there is a dedicated center with treatment-based protocols, equipment, specialized staff and a nurse navigator.
Why isn’t there a similar process for diagnosis, care and support for the dementia diagnosis?
The various types of dementia are serious, life-ending diseases with numerous ramifications for the person diagnosed, caregiver and family. But this is not just a Durango problem, it is a national attitude.
One saying when receiving a dementia diagnosis is “diagnose and adios.” Another common phrase is “Cancer = Casseroles. Dementia = Distance.” Is this an issue of caring or of not knowing what to do or how to help?
Shame can be felt by all impacted. People have contacted Durango DDC asking for resources but refused to give their name. Others speak of “coming out” when sharing their diagnosis.
Dementia is a brain disease just like hypertension or Chronic obstructive pulmonary disease. Shouldn’t we view and treat it as such?
Many are not tested or diagnosed for cognitive decline/dementia because they may not not want to know. Sometimes practitioners don’t want to add to a person’s suffering so may not approach. Testing is important as the number of young onset dementia diagnoses is rising sharply. It is difficult to fathom that people in their 40s, 50s, 60s are developing the disease.
Medicare/Centers for Medicare & Medicaid Services and insurances may have discriminated by not reimbursing for team-based medical-social dementia care. However, CMS recently funded an eight-year demonstration project, “GUIDE,” which reimburses team-based care and caregiver respite. It encourages the melding of medical and social systems, but more work is needed that addresses the needs of the individual beyond prescriptions.
In Durango, one of the most positive changes has been Mercy CommonSpirit’s commitment to providing palliative care at the time of diagnosis. These nurse practitioners have great skills and expertise to help families navigate the medical system, as well as patients’ needs as the disease progresses.
Twenty months ago, there was only one local support group for dementia caregivers in Durango. Today, there are four, one of which is for people diagnosed with dementia. In addition, there are more options for respite care, socialization and caregiver education within our community.
Pat Demarest is a caregiver and member of the Durango Dementia Coaltion, www.durangodementiacoalition.org. Email durangodementiacoalition@gmail.com to learn more.
