Dementia & Alzheimer's Disease (AD) Caregivers
Providing care for a patient or a loved one with Alzheimer's disease or another form of dementia can be especially challenging, as these diseases affect memory, behavior, judgement, thinking, and the ability to take care of yourself. You'll need to learn about AD and other dementias so that you'll know how best to provide care throughout each stage of the disease, adapt how you provide care and support as the disease progresses, and learn when to reach out for advanced help when needed.
The stresses of caregiving can be overwhelming at times, but you are not alone in your caregiving journey. There are many local and national resources available to you that provide education, support, reassurance, and advice.
About Dementia & Alzheimer's Disease
What is Dementia?
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 is not a normal part of aging. It's caused by damage to brain cells, which interferes with these cells' ability to communicate with each other. The type of dementia is determined by where in the brain this damage takes place, and which abilities are impacted. For example, in Alzheimer's disease, the hippocampus is often the first section of the brain to be affected, resulting in memory loss.
Learn more about dementia from the Alzheimer's Association, including general information, common types of dementia, and the difference between Alzheimer's and other dementias. The Alzheimer's Association offers many valuable tools, resources, and information for caregivers of someone with Alzheimer's disease or other dementias.
What is Alzheimer's Disease?
Alzheimer's disease is an irreversible, degenerative, and progressive brain disease, and the most common form of dementia that affects memory, behavior, and thinking. AD is not a normal part of aging, although it currently affects an estimated 5.8 million Americans. Alzheimer's disease is believed to be caused by a combination of genetic, environmental, and lifestyle factors – which impact when the disease begins and how it progresses.
Learn more about Alzheimer's disease from the Alzheimer's Association, including general information, early signs and symptoms, and treatments.
The National Institute on Aging also has some great resources and information about Alzheimer's disease and dementia.
Dementia & Alzheimer's Disease Treatment
There is currently no cure for Alzheimer's disease or progressive dementias, though some medications can be helpful in managing symptoms. Some healthy lifestyle efforts are believed to help prevent AD and other forms of dementia.
Speak with your practitioner to learn more about what may be most helpful in your specific situation.
Responsibilities as a Dementia / Alzheimer's Disease Caregiver
Every situation surrounding Alzheimer's disease and other dementias is different, as are potential roles as a caregiver for someone with the disease. Some of your responsibilities may include:
- Ensuring their home is safe for them
- Offering encouragement for exercise – both physical and mental
- Cooking and cleaning
- Arranging social visits with friends and family
- Planning or helping to plan their medical, legal, and financial affairs
- Examining their driving ability and intervening when no longer safe
- Providing emotional support and company
Learn more about being caregiver for someone with Alzheimer's disease or dementia from MedLinePlus, a service of the National Library of Medicine, including additional possible responsibilities, helpful services and facilities, related issues, specifics, statistics and research, and more.
Tips for Dementia / Alzheimer's Disease Caregivers
Since dementia and AD impact memory, communication, thinking, and personality, providing care for a loved one with the disease can be especially challenging. The below links may be able to help you as you and your loved one navigate new challenges:
- Tips for caring for a loved one with dementia
- Five fundamentals for caring with someone with dementia
- Controlling the stresses of caregiving, including recognizing the warning signs, calming down, modifying your thoughts, and more
- Tips for daily tasks, including reducing frustrations, being flexible, creating a safe environment, and focusing on individualized care
- Caregiver's guide to understanding dementia behaviors, including communication tips, handling troubling behavior, wandering, incontinence, and more
National Resources
Whether your role as a caregiver involves daily care, medical care, involvement in decision making, or support, there are many national resources available that can help you in your caregiving journey:
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.
Local Resources
Find local resources and organizations that offer support for dementia and Alzheimer's disease caregivers:
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.
Frequently Asked Questions
Just as every situation is unique, so will be your role as a caregiver. You will most likely have many questions as you provide care for your loved one, and that is completely normal. We hope the below list will help answer some of your questions.
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:
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:
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:
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:
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.
When to Consider Long-Term Care
Long-term care services and facilities help people live as safely and independently as possible when they are no longer able to do so on their own in their current situation. If possible, try to discuss and plan long-term care options with our loved one before it is needed.
Visit our when to consider long-term care page to learn more, including the various types of long-term care, how to discuss this with your loved one, and how to know when it is time for long-term care.