Resources for Dementia & Alzheimer's Disease Caregivers

The Alzheimer's Association is the leading voluntary health organization in Alzheimer's disease care, support, and research. Their mission is to end Alzheimer's disease and all other dementias by working to accelerate global research, driving risk reduction and early detection, and maximizing quality care and support.

The Alzheimer's Association has local chapters in Albany (the Northeastern New York chapter) and Syracuse (the Central New York chapter), and offers online and in-person support groups, free online training for caregivers, and resources for understanding life and caregiving with Alzheimer's disease and dementia.

The Alzheimer's Association, in collaboration with MedicAlert® Foundation, provides membership plans with 24/7 Wandering Support. Visit their webpage to learn more about how this works or to purchase a membership.

AARP is a United States-based interest group focusing on issues affecting those over the age of fifty. They offer multiple resources for family caregivers, as well as Alzheimer's disease- and dementia-specific resources and articles, including articles about how to make your home safer and easier to navigate, tips for meeting the unique challenges of caring for someone with dementia or Alzheimer's disease, best ways for dementia and Alzheimer's disease caregivers to handle a loved one's memory loss, and five things that a family caregiver is glad they did for their dad with Alzheimer's disease.

The Alzheimer's Association and AARP have collaborated to offer their community resource finder tool, which provides easy access to local resources. These resources include education programs, support groups, housing options, and community, medical, and home care services.

Enter your zip code into the community research finder tool to find local support groups near you, like this result page that lists dementia and Alzheimer's disease support groups within 50 miles of Cooperstown, NY.

MedlinePlus is a service of the National Library of Medicine (the world's largest medical library), and is an online health information resource for patients and their family and friends. Their mission is to  provide trusted, easy-to-understand medical information.

The Alzheimer's Foundation of America (AFA) 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.

The AFA offers free weekly support groups for caregivers facilitated by licensed social workers, webinars, professional training and education, an online memory test, and more.

The National Institute on Aging (NIA) leads a broad scientific effort to understand the nature of aging and to extend the healthy, active years of life. NIA is the primary federal agency supporting and conducting dementia and AD research.

NIA offers information about Alzheimer's disease and related dementias (basics, causes, symptoms and diagnosis, and treatment), and information for caregivers.

Project Lifesaver is a radio transmitter bracelet. Their program has helped provide thousands of families peace of mind daily, knowing that their loved one has protection and safety in case they wander. Every county in New York State has the program, though enrollment varies.

Albany Medical Center's CEAD offers caregiver tips, support groups, education and training, diagnostic testing and referrals, and more.

The Alzheimer’s Caregiver Support Initiative is a New York State grant funded effort which seeks to alleviate the financial and emotional burden placed on these caregivers. The initiative provides a wide range of free support and respite services for caregivers across a 10-county region, including care consultations and care teams.

View St. Peter's Health Partners' Alzheimer's Caregiver Support Initiative brochure.

The NYS Office for the Aging & NY Connects' goal is to improve access to, and availability of services that enable older New Yorkers to live, work, and age in their community of choice. Learn more about caring for a loved one and help for family caregivers in NYS.

Upstate University Hospital's CEAD develops an individualized care and management plan for each patient, which depends on the disease stage, patient's level of function, and amount of support that is available. Referrals are made to appropriate community resources, such as adult day care, home care, respite, or long-term care, and the social worker follows each care plan so that it can be adjusted or revised as needed. The goal of all treatments and care plans is to reduce the stress and burden Alzheimer's disease has on the patient and family.

The Resource Center for Independent Living (RCIL) provides training and education for low income, rural caregivers. Respite is available for caregivers while they attend a program. RCIL has offices in Utica, Herkimer, and Amsterdam.

Dementia is an umbrella term, rather than a specific disease, that is used to describe a wide range of abnormal brain changes that reduce cognitive abilities enough that daily life is affected. Dementia displays symptoms that impact memory, communication skills, and the ability to perform daily activities.

Alzheimer’s disease is the most common form of dementia. It gets worse with time and impacts memory, language, and thought.

Since dementia isn't a specific disease itself, the various forms of dementia affect people differently. There are some common symptoms, however, that may begin presenting themselves before a diagnosis is made:

• Memory loss
• Difficulty concentrating
• Finding it hard to carry out familiar daily tasks
• Struggling to follow a conversation or find the right word
• Being confused about time and place
• Mood changes

Different people may display different signs of initial symptoms, however, memory problems are typically one of the first signs of Alzheimer’s disease.

An Alzheimer's disease or dementia diagnosis is difficult to comprehend. Learn how you or your loved one can accept the diagnosis, including your feelings of grief and loss as the disease progresses.

Learn more about self-care as a caregiver, stress management, and the different types of grief and loss:

• Family Caregiver Alliance – Self-care
• Mayo Clinic – Stress management
• Family Caregiver Alliance – Grief and loss

The Alzheimer's Association has many resources and information available regarding stages and behaviors of Alzheimer's disease or related dementias.

Visit alz.org to learn more about the various stages and what your role as the caregiver may involve at each stage:

• Early-stage caregiving
• Middle-stage caregiving
• Late-stage caregiving

There are many local and national resources online, as well as in-person support groups, that will help you throughout your caregiving journey.

The Family Caregiver Alliance has compiled a list of resources, including facts and tip sheets that describe hands-on skills for caregivers, bathing, communication, dressing and grooming, and much more for caregivers of both Alzheimer's disease and dementia.

Even if it's just for moral support or the occasional visit, help from other loved ones can be invaluable. That help can come in many forms, no matter how near or far your siblings or other family members are from you and the person you are providing care for.

Learn how you could get more help from other family members from the Family Caregiver Alliance:

• Getting sibling help with caregiving
• General information about caregiving with siblings
• Reducing sibling tensions
• Four tips to gain support from siblings

Some people with Alzheimer's disease or dementia experience sundowning – a sensation that results in increased confusion, anxiety, aggression, or other symptoms/behaviors at specific times of the day, most commonly in the evenings. This most often occurs during the middle-stage of the disease.

The cause of this behavior isn't known, but there are some tips that can help you reduce the effects. Learn about these tips from the Family Caregiving Alliance, as well as from Mayo Clinic.

Long-distance caregivers generally live an hour or more away from their loved one. This can make the coordination of care difficult, but there are steps that you can take to assist a loved one who lives far away from you.

Learn how you can help as a long-distance caregiver from the below resources:

• National Institute on Aging
• AARP
• Alzheimer's Association

Being a caregiver is difficult, especially if you are taking care of a loved one.

The Family Caregiver Alliance, part of the National Center on Caregiving, has compiled a list of tools you can use as a caregiver to identify any personal barriers and move forward with self-care while you care for your loved one. They have also created a list of simple steps and strategies to keep in mind to ensure you care for yourself.

The National Alliance on Mental Illness (NAMI) has also created a page to help caregivers care for themselves. Learn about their tips for taking care of yourself, including understanding how stress affects you, protecting your physical health, recharging when needed, and practicing good mental habits.

The Alzheimer's Association has many great resources for caregiver health as well, including information on how to stay physically and emotionally strong, how to handle caregiver stress, how to connect with your loved one as the disease progresses, and more.

It is very common to feel overwhelmed and exhausted at certain points in your caregiving journey – especially if you are also working full or part time and have other family obligations.

Respite care is an option that gives caregivers a break from their caregiving responsibilities. Learn more about respite care from either HelpGuide or the Alzheimer's Association, including how it can help both you and your loved one, types of respite care, and overcoming potential concerns you may have about respite care.