This is a supplement to 1R21NR017979-01A1 from NINR, to tailor a dyadic resiliency program (Recovering Together) which we developed and are currently testing for feasibility and proof of concept in dyads of patients with acute brain injuries, for the specific needs of dyads of patients with young onset dementias -Alzheimer?s Disease, Frontotemporal Dementia, and Primary Progressive Aphasia- and their family caregivers. Young onset dementias are unified by early onset, atypical symptoms (e.g., confusion, personality changes, reduced motivation and challenging behaviors) and rapid progression. A variety of recent conceptual and technical advances are enabling earlier, more confident diagnoses of young-onset dementias. Such a diagnosis is often sudden and traumatic, and leads to heightened emotional distress for both patients who must adjust to living with a progressive, incurable condition that rapidly and dramatically alters an individual?s identity and life trajectory, and for the loved ones who witness these changes and need to assume the responsibility of serving as primary caregivers. Currently there are no resiliency prevention programs developed to address the emotional burden of receiving a diagnoses of young onset dementia for both patients and caregivers. As part of this supplement, we will conduct up to 30 qualitative interviews with dyads of patients with these young onset dementias (Alzheimer?s Disease, Frontotemporal Dementia and Primary Progressive Aphasia) and their caregivers and develop the dyadic program Resilient Together. Resilient Together will be developed from Recovering Together using qualitative feedback from dyads with young onset dementia. Modeled after ?Recovering Together?, the new intervention ?Resilient Together? will teach patients with young onset dementias and their caregivers valuable resiliency and interpersonal communication skills necessary to navigate the challenges that lie ahead and to prevent chronic emotional distress. In the last 3 months of the award we will submit an R21 application through NIA or NINR to conduct a proof of concept feasibility trial of Resilient Together versus an attention placebo educational control, using the methodology and outcomes currently employed in our NINR R21 grant. Our team is uniquely positioned to conduct this study with specific experience in qualitative interviews, intervention development, and young onset dementias. Our collaboration with Dr. Dickerson, expert in young onset dementias, director of the Massachusetts General Hospital Frontotemporal Disorders Unit and staff neurologist within the Alzheimer?s Disease Research Center solidifies our ability to recruit and retain dyads. This is, to our knowledge, the first attempt to develop a dyadic intervention for patients and families living with young-onset dementias/Alzheimer?s Disease, to prevent chronic emotional distress.
A diagnosis of young onset dementia is traumatic for both patients and family caregivers, often leading to chronic emotional distress that impacts quality of life for the entire family structure. Psychosocial interventions for patients with these dementias are not yet good enough, as they do not account for the patient-caregiver interactions, are not aimed at improving both patient and caregiver emotional outcomes, do not address the unique needs of this population, and are rarely delivered early after the diagnoses. Developing a dyadic intervention that teaches resiliency skills patients and caregivers with young onset dementia, to be delivered early after the diagnoses is the most effective and efficient way to prevent chronic emotional distress in at risk dyads of patients and caregivers.
