Neuroscience patient and caregiver resources
Explore resources for patients living with psychiatric and neurological conditions and their caregivers
Alzheimer’s disease resources
Alzheimer's disease is the leading form of dementia characterized by the progressive loss of cogntive function, including thinking, remembering and reasoning. Behavioral disturbances, such as psychosis, agitation and agression are also common symptoms.
Caring for Geri: An Alzheimer's disease caregiver's journey
Video Transcript
JIM TAYLOR: I'm Jim Taylor. I lead a patient advocacy organization for dementia patients called Voices of Alzheimer's.
My second wife, Geri, I married and had a wonderful marriage; together 33 years. Geri was a health administrator, a nurse and knowledgeable person and she had familial Alzheimer's.
Her likelihood of developing Alzheimer's was very high. In her 60s, she began to experience cognitive impairments.
After several months of continuing episodes, went to the neurologist and was diagnosed with mild cognitive impairment. It most frequently becomes Alzheimer's, as it did for Geri.
Geri had a 12-year journey with Alzheimer's. She was very, very fortunate to get into an amazing clinical trial.
A care partner’s job is to try to make the remaining time for the patient as just as glorious as possible and I think participating in a trial is part of that job.
I had not entertained in any way that my brilliant wife had any significant cognitive impairment. So, to hear the words “possibly Alzheimer's” was devastating.
I needed more than she to emotionally adjust to what was happening and how our life had been inalterably changed.
When Geri was suffering from what many Alzheimer's patients incur, she would look in the mirror and not recognize the woman she saw.
And she thought she heard kids outside calling her name, needed help from her. So, we'd go out and look and of course, there was nobody there.
But the agitation accelerated to the point where she was very aggressive. In the evening, she became unhappy, unpleasant, argumentative.
I think it's important that people know about agitation, about psychosis. Many patients experience these symptoms.
I wish for myself that I had had the courage to better understand symptoms. I would have been better prepared. I don't think I would have interacted differently with Geri, but I wouldn't have been so frightened.
It's hard to reach people that are living with Alzheimer's today. So, we as a community—advocacy, patients, care partners, families, pharmaceutical companies, researchers—need to do a better job getting people to understand why they benefit, both physically and psychologically, from participating in a clinical trial.
We need to encourage care partners to engage in clinical trials and research that will address the symptoms of agitation and psychosis. We're going to stay right where we are unless people have the courage to say, “I will. Yes, I will do that.”
Geri said this treatment makes me a part of the team that's trying to find a cure. A cure, maybe not for myself, but for the public and for my children and my grandchildren.
Alzheimer's disease fact sheets
Alzheimer's disease caregiver guides
Alzheimer’s disease advocacy groups
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Alzheimer’s Association
The Alzheimer’s Association is working to accelerate the field toward solutions for Alzheimer’s disease care, support and research.
Alzheimer’s Foundation of America
Provides support, services and education to individuals, families and caregivers affected by Alzheimer’s disease and related dementias nationwide, and funds research for better treatment and a cure.
CaringKind
Offers guidance, education and a dedicated helpline for every step of the way.
National Institute on Aging
One of the National Institutes and Centers of the NIH that leads a broad scientific effort to understand the nature of aging and to extend the healthy, active years of life.
UsAgainst Alzheimer's
UsAgainstAlzheimer's is committed to ending Alzheimer's disease through treatments, prevention and ultimatly a cure.
Voices of Alzheimer's
Voices of Alzheimer's is on a mission to transform the landscape of Alzheimer's disease care and understanding.
Schizophrenia resources
Schizophrenia is a persistent and often disabling mental illness impacting how a person thinks, feels and behaves.
Schizophrenia advocacy groups
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CureSZ
Offers advocacy, information, advice as well as educational and supportive resources to enhance the understanding of schizophrenia.
Schizophrenia & Psychosis Action Alliance
Focused on advancing systemic change and promoting recovery through research, education & care and advocacy & public policy.
Mental health advocacy groups
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Caregiver Action Network
Provides caregiver resources for a number of chronic conditions including schizophrenia and Alzheimer’s disease.
Clubhouse International
Offers people living with mental illness an opportunity for friendship, employment, housing, education and access to medical and psychiatric services in a single caring and safe environment.
Mental Health America
Resources dedicated to the promotion of mental health, well-being and illness prevention.
National Alliance on Mental Illness
The largest U.S. mental health organization dedicated to building better lives for Americans affected by mental illness.
National Council for Mental Wellbeing
An association that drives policy and social change on behalf of more than 3,400 mental health and substance use treatment organizations, advocating for equitable access to services, building capacity for care delivery, investing in the workforce and promoting mental wellbeing as a core component of health and health care.
