A Guide to Alzheimer’s Caregiving
Last Updated: August 12, 2021
Alzheimer’s, the most common type of dementia, is becoming increasingly prevalent across the United States. The most recent data shows that about one in nine people aged 65 and over are living with this disease, and by 2050, the number of people with Alzheimer’s is expected to double.
Those with Alzheimer’s who live in the community are far more likely than older adults without memory-related disorders to rely on unpaid caregivers. In fact, 92% of seniors with Alzheimer’s receive help from family members and other unpaid caregivers.
On average, family caregivers spend about 13 days each month taking on tasks, such as shopping, food preparation, laundry, transportation, and medication management; six hours on personal care, such as dressing, grooming, bathing, mobility, and toileting and 13 hours researching information on the disease, managing their loved one’s finances and scheduling doctor’s appointments.
Clearly, this doesn’t leave much time for other obligations and even less time for enjoying hobbies and downtime. It makes sense to feel overwhelmed and unsure of how to provide the best care for your loved one while maintaining your own physical and mental health.
We created this guide to provide you with some pointers on what to expect as your loved one’s condition progresses. We cover topics, such as how to put together a support system and avoid burnout. We also include a resource guide to help you connect with experienced professionals who can help along the way.
Steps to Take After a Loved One’s Alzheimer’s Diagnosis
An Alzheimer’s diagnosis can be a traumatic experience, even if it’s not entirely surprising. Before proceeding further, the Alzheimer’s Association recommends getting a second opinion to confirm the diagnosis. Proactively seeking an accurate diagnosis as early as possible ensures appropriate treatment and gives your loved one the opportunity to take an active role in their care plan, including whether they want to continue living at home, which memory care facility they want to live in, and who should make decisions on their behalf when they can no longer do so.
Once an Alzheimer’s diagnosis is confirmed, you should expect to experience a full spectrum of emotions. Nora O’Brien, a Doctor of Physical Therapy and Executive Director of Willow Gardens Memory Care, speaks to the importance of processing the roller-coaster of emotions that may accompany an Alzheimer’s diagnosis. She says, “Give yourself and your loved one time to grieve and feel emotions — which may include denial, sadness, anger, guilt and frustration. Remember that your loved one is more than this disease. Though your relationship may change over time and you and they will experience loss, their need for belonging will remain.”
Alzheimer’s is a chronic disease that may continue for 20 years or more. It may not be realistic to mentally prepare for every challenge and victory the coming years may bring, but there are a few steps you can take to gear up for the journey.
Chances are that your loved one’s diagnosis is the first time you’ve had an up-close and personal experience with Alzheimer’s. Educating yourself as much as possible can help alleviate fears and prepare you for the future. Unfortunately, even a quick internet search can overwhelm you with a massive amount of information. For now, topics to pay attention to include the stages of Alzheimer’s, common caregiving issues, available treatment options, and what lifestyle practices might help slow the progression of the disease.
Getting organized not only helps you take on challenges as they arise, but it can also give you a sense of control in an unpredictable situation.
Early-stage Alzheimer’s is the best time to take legal and practical steps to protect your loved one’s assets. If you haven’t had an active role in helping them manage their finances, then it’s important to have a frank discussion about their financial situation, including monthly income, options for funding their care, and any credit card debt or loans they have.
Develop a system for record-keeping by organizing designated binders or folders where you can store your loved one’s financial records, medical records, and contact information for anyone who’s important to them. It’s a good idea to create these records as soon as possible early in the diagnosis, so your loved one can tell you who they want on the list.
Setting up an easily visible calendar in your loved one’s home can help them remember medical appointments, scheduled visits with friends and family, and support group meetings. Many dementia specialists also recommend helping the individual get into the habit of maintaining a dated journal where they can write notes, details of a conversation, and other day-to-day things they want to remember.
Create a resource list of names and contact information of local organizations that can provide care for your loved one. This list can include local churches and nonprofit agencies that host support groups and engagement activities, along with friends and family members who’ve volunteered to run errands or help with home maintenance.
Build Your Team
Caring for someone with Alzheimer’s is a big job, and you don’t have to do it alone. Building a care team of specialists can connect you with helpful pointers, emotional support, and insight into what to expect as your loved one’s condition evolves.
A Primary Care Physician
An experienced primary care physician provides routine and preventative care while monitoring and treating a variety of health conditions. It’s important that the primary care physician is easily accessible, has experience managing memory conditions, and is happy to answer lots of questions from concerned family members. If your loved one’s current doctor doesn’t fit the bill, you may want to consider transferring to a new one.
A Physician Specialist
As soon as possible, connect with a doctor who specializes in an area related to Alzheimer’s and has extensive experience in treating those with this disease. This may include:
- A geriatrician (specialist in aging and age-related disorders)
- A primary care doctor who specializes in caring for patients over 50
- A neurologist (specialist in disorders of the nervous system; some specialize in geriatric neurology)
- A psychiatrist (specialist in mental illness; some specialize in geriatric psychiatry)
A Psychologist or Neuropsychologist
A psychologist can help you understand the impact the disease may have on your loved one’s moods, behavior, and personality. A neuropsychologist can help you understand how the condition of your loved one’s brain affects their ability to communicate and remember information. Both can help you proactively manage behavioral and psychological issues that arise as the disease progresses.
Geriatric Care Specialists
Geriatric care specialists include social workers, case managers, care coordinators, and care consultants who have special training and experience working with older adults with Alzheimer’s. They can assess your loved one’s condition and give pointers on helping them maintain a high quality of life. Services they provide may include:
- Evaluating your loved one’s ability to live independently and perform certain tasks
- Assisting with developing and updating a care plan
- Providing information about services and resources available in your community
- Coordinating services, such as home-delivered meals, transportation and respite care
- Giving practical advice on care-related issues
- Mediating conflicts between family members who have different perspectives on their loved one’s care
A Home Healthcare Nurse or Aide
Serving as the primary caregiver for someone with Alzheimer’s can be overwhelming, especially as the disease progresses and your loved one’s need for care and supervision changes. Even if you feel like you have a good handle on their care now, hiring a home healthcare nurse or aide to serve as an extra set of hands can save you from burnout later on.
An Elder Law Attorney
An elder law attorney can serve as an objective third party in helping families navigate difficult decisions related to managing their loved one’s assets and deciding who should make decisions on their behalf. They can help draft legal documents outlining who should make financial, legal, and medical decisions on behalf of your loved one when they’re no longer able to do so themselves.
Plan Ahead for Care
In the early stages of Alzheimer’s, it’s possible that very little in your loved one’s life needs to change. Most people with early-stage Alzheimer’s can remain in their own homes with sufficient supports and daily checks.
The exception to this is driving. Because poor judgment and getting lost are hallmarks of the disease, driving can be very dangerous, even for someone with early-stage Alzheimer’s. Now’s the time to make other arrangements for transportation.
While the progression of Alzheimer’s can be slowed for some, the reality is that decline is inevitable. There are several options for ensuring that your loved one’s care needs are met, including hiring a live-in aide or transitioning to a memory care facility, which may either be freestanding or located within an assisted living facility. Having a plan in place can save you from the stress of second-guessing your decisions.
Alzheimer’s Caregiving Essentials
Providing care for someone with Alzheimer’s is physically, emotionally, and mentally challenging, and it’s easy to overlook how your new role as a caregiver may affect you. These strategies can help you stay a step ahead of stress.
If self-care sounds like an impossible feat as you’re caring for someone with Alzheimer’s, then you’re probably putting your own needs too far down on your priority list. While it may seem counterintuitive, ignoring your own needs makes you less effective, not more. Neglecting self-care makes you more vulnerable to everything from viruses to depression and anxiety. Avoiding stress may not be possible, but proactively managing it can help you avoid burnout.
Nicholas McGowan, BSN, RN, CCRN, who has over a decade of experience in neurological trauma, notes the importance of self-care. He states, “One of the first things you want to do when caring for a loved one with Alzheimer’s is to support yourself. Caregiving is hard on the caregiver, and it can become easy to get frustrated, angry, regretful, and just plain burned out. Start by accepting their diagnosis and learning about it. Give yourself time to grieve and find support as you learn to accept this change in your loved one.”
Make time for yourself every day, whether it’s a 20-minute walk around the block, reading a few chapters of a book or enjoying a favorite hobby. Prioritize maintaining a healthy, varied diet and get enough sleep. Cultivate good sleep hygiene and ensure that your bedroom environment and daily routines support consistent, uninterrupted sleep.
It’s also a good idea to let your doctor know about your new role as a caregiver. They may give you some pointers on managing stress and anxiety.
The Ability to Ask for Help
Asking for help isn’t always easy, but the truth is, most people would be happy to share the load. Have a running list of every person who’s reached out, and jot down a few ways that they may be able to help. For example, a neighbor may be happy to drop in for 30 minutes once or twice per week to give you an opportunity to go for a walk. A friend may be willing to pick up groceries while they’re doing their own weekly shopping or provide transportation to a medical appointment.
If someone can’t help you, they’ll let you know, but unless you ask, you won’t know what others can do to provide you some relief.
Support from Family and Friends
The support of family and friends is invaluable throughout the duration of your role as a caregiver. If you’re caring for a parent, for example, siblings can help in practical ways, such as sharing care duties and financial burdens and helping make decisions. Friends and family members can also provide emotional support and reassurance by lending a hand or a listening ear.
Occasional disagreements among family members are inevitable, and the added stress of conflict can make caregiving feel even more challenging. In these instances, bringing in an objective third party, such as a geriatric care manager, to mediate can bring clarity.
For many people, becoming the primary caregiver of someone with Alzheimer’s feels like joining a secret club. This new community can be a valuable resource for information, coping strategies and available services and supports. A study conducted in 2020 showed that accessing community support had a profound effect on family caregivers’ mental health and helped delay nursing home placement for those with dementia.
Services such as community-based respite, adult day health services, and assistive devices typically fly under the radar for those who don’t have experience with Alzheimer’s. To find resources, O’Brien suggests creating a support network that can help you navigate issues as they arise. She states, “It will be helpful to work with your doctor to understand your loved one’s diagnosis and to learn about what to expect in the future. Build a support network for you and your family. Join a support group… Talking with others who understand what you are going through can be tremendously helpful. If you’re more comfortable researching on your own, the Alzheimer’s Association and the Alzheimer’s Foundation of America have comprehensive online information resources.”
To keep resentment from building, it’s important to be realistic about your situation and your loved one’s prognosis and adjust your expectations accordingly. Recognize that family members who live far away may not be able to help with day-to-day care tasks, and younger family members may not understand changes in your loved one’s personality and may keep some distance.
It’s also important to be realistic about the progression of the disease. Your loved one may have good days where everything seems normal, followed by days with mood swings and difficult behaviors. While the challenging days are unavoidable, it’s helpful to keep predictable routines and figure out what kinds of food, activities and music appeal to your loved one.
A Game Plan
As a caregiver, the demands placed on your time, energy and financial resources will grow as time goes on. Having a game plan in place that addresses new challenges as they arise can help you mentally and emotionally prepare for changes and help everyone understand what’s required of them, financially and otherwise.
While you can’t prepare for every single possibility, you can research what’s likely to happen and what your options are. For each change in your loved one’s condition, consider:
- What level of care is necessary at this stage?
- Who will provide the care?
- Where will they live?
It’s important to discuss your game plan with family members and get the input of professionals, such as geriatric care managers and your loved one’s doctor. Having these difficult talks long before it’s necessary can help you feel confident about your decisions when it’s time to change where and how your loved one receives care.
Care Options for Seniors with Alzheimer’s Disease
Alzheimer’s tends to progress in three general stages, including mild, moderate, and severe. Those in the mild stage of Alzheimer’s may be able to function independently and continue to participate in social and recreational activities. During the moderate stage, which is the longest stage and can last for years, the individual may experience changes in their appetite and sleep patterns, be unable to remember information about themselves, and have an increased tendency to wander and become lost.
During the final stage, the individual loses their ability to respond to their environment, carry on a conversation and control their movement. At this stage, it is extremely challenging for family caregivers to provide care for their loved one without professional assistance. While you’ve undoubtedly poured yourself into your role as caregiver and have spent countless hours ensuring that your loved one is safe and comfortable, at some point, they’ll need more care than you can reasonably provide. When this time comes, you have two primary options.
In-Home Care for Seniors with Alzheimer’s
In-home care includes professional support services that enable the individual to live safely in their own home or that of a family member. This type of care is ideal for those who want their loved ones to receive long-term care but aren’t ready to transition them to a residential care community.
In-home care, also called home care, typically includes assistance with daily living activities, such as meal planning and preparation, toileting and bathing, companionship, and transportation for medical appointments. Home health care is another type of home-based care that also includes skilled nursing services, such as monitoring vital signs and speech and occupational therapy. Caregivers can be hired to provide a few hours of care weekly or full-time daytime care, depending on your loved one’s needs.
Memory care offers around-the-clock care and monitoring in a residential care setting. These facilities may be freestanding or located within a secured wing of an assisted living facility.
While regulations vary considerably by state, memory care facilities typically feature advanced security systems with controlled access and secured indoor and outdoor living spaces to prevent wandering. They’re staffed with specialized caregivers with dementia-specific training in communication techniques, recognizing pain, managing difficult behaviors, and honoring residents’ rights as the disease progresses.
Memory care facilities often have dementia-informed programming to keep residents comfortable and as engaged as possible. Many facilities incorporate brain games, therapeutic activities, such as gardening and art, and open layouts to reduce confusion and support residents’ independence.
Resources and Support Groups for Alzheimer’s Caregivers
Regardless of where you are in your journey as a caregiver for someone with Alzheimer’s, there’s a wealth of resources that provide information, emotional support, and advice to help you along the way. We’ve created this list of online resources and support groups to help you navigate the challenges and victories of caring for a loved one with dementia.
|Resource ||Website/ Contact ||How It Helps |
|Alzheimer’s Association Caregiver Resource Center||https://www.alz.org/help-support/caregiving||The Alzheimer’s Association operates a free 24/7 helpline operated by specialists and master’s-level clinicians who provide emotional support and practical advice and guidance for caregivers. The organization also maintains an up-to-date virtual library with materials covering topics, such as behavior management and caregiving strategies. |
|Alz Connected||https://www.alzconnected.org/||Alz Connected, part of the Alzheimer’s Association, is a virtual support group for those affected by Alzheimer’s. It has forums for caregivers, family members and friends and people with the disease. |
|NIA Alzheimer’s and Related Dementias Education and Referral Center ||https://www.nia.nih.gov/alzheimers |
Email the ADEAR Center
|The ADEAR center provides comprehensive information on Alzheimer’s diagnosis, treatment, caregiver needs, long-term care options and clinical trials. |
|Alzheimers.gov ||https://www.alzheimers.gov ||The Alzheimers.gov portal connects you with information and resources on Alzheimer’s from the federal government. |
|Alzheimer’s Foundation of America ||http://www.alzfdn.org|
|The Alzheimer’s Foundation of America funds research for Alzheimer’s care and connects families and caregivers with information, services and support. |
|Eldercare Locator ||https://eldercare.acl.gov|
|The Eldercare Locator is a federally-funded service of the Administration on Aging. It connects caregivers with community resources, such as adult day health care, home care and memory care facilities. |
|National Institute on Aging Information Center||https://www.nia.nih.gov/health |
Email the NIA Information Center
|The National Institute on Aging Information Center provides free information on age-related topics, such as Alzheimer’s and related dementias, caregiving, doctor-patient communication and end-of-life planning. |
|Aging and Disability Resource Centers||https://acl.gov/programs/aging-and-disability-networks/aging-and-disability-resource-centers||Aging and Disability Resource Centers are located throughout the country to provide a single point of contact for those looking for long-term services and supports. |
|Memory Cafe Directory||https://www.memorycafedirectory.com||Memory Cafes are informal environments where those affected by Alzheimer’s can meet up, socialize and build support networks. Through the directory, you can connect with a Memory Café in your area.|
Partnering with Your Doctor: A Guide for Persons with Memory Problems and Their Care Partners. Alzheimer’s Association (2003). https://www.alz.org/national/documents/brochure_partneringwithyourdoctor.pdf. Accessed 7/9/2021
Alzheimer’s Association. (n.d.). Stages of Alzheimer’s. Alzheimer’s Disease and Dementia. https://www.alz.org/alzheimers-dementia/stages Accessed 7/10/2021
Alzheimer’s Association. (2021a). 2021 Alzheimer’s Disease Facts and Figures. https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf Accessed 7/9/2021
Alzheimer’s Association. (2021b, March). State Alzheimer’s Disease Plans. https://alzimpact.org/media/serve/id/5d23af19258fb Accessed 7/10/2021
Caregiver Statistics: Demographics. (2021, February 17). Family Caregiver Alliance. https://www.caregiver.org/resource/caregiver-statistics-demographics/ Accessed 7/11/2021
Centers for Disease Control and Prevention. (n.d.). What is Alzheimer’s Disease? | CDC. Alzheimer’s Disease and Healthy Aging. https://www.cdc.gov/aging/aginginfo/alzheimers.htm Accessed 7/10/2021
Partnering with Your Doctor: A Guide for Persons with Memory Problems and Their Care Partners. (2003). Alzheimer’s Association. https://www.alz.org/national/documents/brochure_partneringwithyourdoctor.pdf Accessed 7/11/2021
Schulz, R., & Sherwood, P. R. (2008). Physical and Mental Health Effects of Family Caregiving. AJN, American Journal of Nursing, 108(9), 23–27. https://doi.org/10.1097/01.naj.0000336406.45248.4c Accessed 7/10/2021
Stoia, D. C. M., ȘTefănuț, A., Moldovan, R., Hogea, L., Giurgi-Oncu, C., & Bredicean, C. (2020). Effectiveness of Family Stress-Relief Interventions for Patients with Dementia: A Systematic Evaluation of Literature. Neuropsychiatric Disease and Treatment, Volume 16, 629–635. https://doi.org/10.2147/ndt.s241150 Accessed 7/10/2021
Suni, E. (2020, August 14). Sleep Hygiene. Sleep Foundation. https://www.sleepfoundation.org/sleep-hygiene Accessed 7/9/2021