Caregivers are exhausted but getting more help
In Texas, 26.7% of caregivers have depression, 11.2% are in poor physical health, and 59.0% have their own chronic health conditions.
The federal Centers for Medicare & Medicaid Services will roll out the Guiding an Improved Dementia Experience model in July. This GUIDE model will provide a 24/7 support hotline, as well as dementia care coordination and management, caregiver education and support, and respite services. It will incentivize providers to include both the caregiver and the person with dementia in delivering support services. The model of “diagnose, then adios, see you next year,” is going away, said Alyssa Aguirre, the assistant director of Dementia Care Transformation at the University of Texas and a social worker at the Comprehensive Memory Center, Mulva Clinic for the Neurosciences at UT Health Austin. Families need education about their disease, emotional support, connection to community resources and help making complicated decisions about future care, she said.
More medications are on the way
There are currently two disease-modifying medications that have been approved by the Food and Drug Administration: lecanemab-irmb, under the brand name Leqembi, and aducanumab-avwa, under the brand name Aduhelm. These drugs target the amyloid beta plaques caused by the amyloid protein. Leqembi was shown to slow cognitive decline by 27% in clinical trials and is showing the same results in local patients receiving the infusions. More medications like these are on the horizon. Eli Lilly is working on getting approval for donanemab, which the manufacturer says slows cognitive declines by 35%.
As of Jan. 1, 2023, 156 clinical trials were testing additional disease-modifying therapies. Some are looking at the tau protein and others are exploring inflammation, altered cell metabolism, or damage from toxic oxygen molecules.
A panel on dementia at South by Southwest, panelists – which included a health futurist, doctors and researchers at aging centers – were encouraged by the number of drugs being developed. They pointed to the potential of devices, including a brain stimulation headband and headphones, virtual reality games, and data from smart watches. They also said more focus should be placed on lifestyle changes such as diet, exercise, sleep, wearing hearing aids, and engaging in cognitive and social activities.
The holy grail is diagnosis before symptoms
Alzheimer's begins 20 years before symptoms are seen. More dementia-related biomarkers and genes are being identified, and that can change how people get diagnosed.
One idea is looking for biomarkers on the layers of the retina. A blood test to diagnose Alzheimer's is being studied to see how accurate it is. Once that is shown to be widely effective, it could be preferable to spinal fluid testing or PET scans because it will be less invasive, quicker and less expensive.
The future is to work on prevention but also precision: Personalized medicine like what is now happening in cancer.