Psychologist Jennie Ward Robinson, PhD, first started thinking about Alzheimer's disease when her mother was diagnosed with it in 1999. She sought to understand both the pathological and psychosocial aspects of dealing with the disease. Her search led her to the Alzheimer's Association, a national nonprofit organization with the mission of helping families cope with the disease. She's now the association's director of medical and scientific affairs--the first psychologist to hold that position.
Propelling her to the post was dissatisfaction with her search for information on her mother's condition. Though she found some research on how mind and body deterioration could be slowed or reversed, there was little on the disease's psychological impact. Also lacking were substantive findings on treatment strategies targeting minorities. For example, few programs addressed cultural differences or alleged bias in screening tools.
"When I came to this field, I found out that the research consisted only of neurologists and basic scientists looking at complex brain tissue," Ward Robinson says. "But you've got all these families on the other end of this, with complex demographics and emotions and burdens to deal with. As a psychologist, I know those things matter and I know those factors impinge on how people deal with a diagnosis and how they would use a treatment."
To help fill the gaps, Ward Robinson decided to get involved and pushed to join the medical and scientific affairs team at the Alzheimer's Association. From there, she's worked to deepen the association's work with psychologists through a partnership with APA CEO Norman B. Anderson, PhD. The collaboration will help her draw on psychology's resources to, hopefully, improve psychometric testing for and diagnosis of Alzheimer's, and to assist patients and their families, particularly in minority and disadvantaged communities.
Her plan is threefold:
Increase psychologists' awareness and knowledge of the disease fundamentals, with APA's help.
Identify gaps in Alzheimer's research and innovation that psychologists are uniquely qualified to fill. Possibilities include psychometric development, clinical care improvements and education and awareness project-planning for families and communities.
Encourage the Alzheimer's Association to broadly include psychologists in its research paradigm.
In particular, Ward Robinson, who previously worked as a neuropsychologist, says the tool primarily used to diagnose Alzheimer's--the Many Mental Status Exam--is not sufficient, and psychologists can help develop a better one.
The test fails to take into account education, race or socioeconomic factors when there are a high percentage of minorities in the diagnosed group--some who may be inappropriately diagnosed because of the tool's cultural insensitivity and some whose families don't understand what the diagnosis means, she says.
Better screening instruments would also reduce confusion between Alzheimer's and general cognitive decline associated with age, which she hopes would help lower Alzheimer's-related stigma.
Indeed, Ward Robinson plans to call on psychologists to help combat stigma, educate their communities about the disease and inform policy-makers about bolstering care for patients and families.
Understanding family stress
Psychologists can also lead the charge in conducting empirical research on the stress faced by family members caring for loved ones with Alzheimer's.
"We still don't understand exactly what it means for caregivers to have stress, to take on four roles: parent, child, worker and caregiver," she says. "Burnout is experienced, and psychologists are uniquely equipped to understand that and help with coping."
Research and policy developments that address the needs of Alzheimer's families could alleviate caregiver stress through psychological treatment and better allocation of scarce financial resources from the government and health-care providers, Ward Robinson says. Key to reducing caregiver stress is better emotional and financial support, she adds.
"In an ideal world, psychologists would work with primary-care doctors and neurologists," she says. "If we could develop some sort of triangulated relationship with the psychologists, the primary-care doctors and the families, we could offer seamless care that would take pressure off everyone in the relationship and improve the quality of care."
Still caring for her mother, now in the later stages of Alzheimer's, Ward Robinson says her family has experienced financial worries, juggling of responsibilities and other typical challenges of families struggling with the disease. So improving conditions for them is her personal as well as professional priority.
Bringing her psychology colleagues on board seems a natural extension of what the Alzheimer's Association does to help families, Ward Robinson says.
"Here is an opportunity to connect people who can help with people who need help," she says.