The decision to care for a loved one living with dementia can be complex. You must carefully consider several factors about your loved one — and yourself, the care/support partner or caregiver. When you’re able to take on dementia care at home, the importance of your efforts cannot be overstated.
“Caregivers are the backbone of the care journey for persons living with dementia,” says Dr. Joel Salinas, MD, MBA, MSc, FAAN, behavioral neurologist and Chief Medical Officer at Isaac Health, a national virtual clinic for dementia management. “The most important thing to know is that you’re doing one of the most demanding yet deeply meaningful jobs imaginable, and you deserve grace and compassion as you navigate it.”
The term “dementia” refers to the loss of the ability to think, remember, and regulate emotions, among other cognitive functions. Many causes of dementia exist, but Alzheimer's disease is the most common. Early signs of dementia will vary based on the specific disease and individual. However, you may have noticed some common symptoms in your loved one.
Among the most common signs of dementia are:
Witnessing these issues and personality changes can have an impact on you and your family. It’s typical to feel sad or frustrated or even wonder if it’s possible for life to return to normal.
The majority of dementia cases are not reversible — only 5–15% are. A physician can perform a comprehensive exam to determine whether your loved one’s condition is reversible. Those cases are usually caused by vitamin B12 deficiency, alcoholism, depression, or thyroid disease, among other factors.
Fortunately, lifestyle changes, such as following a MIND Diet or adhering to Life’s Essential 8™ from the American Heart Association/American Stroke Association, may lower your risk of cognitive decline. These include healthy eating, physical activity, and good sleep, which can improve metabolic health markers, like cholesterol, blood sugar, and blood pressure. You can guide your loved one toward these healthy habits at home.
Almost 12 million Americans serve as unpaid caregivers for someone living with dementia.
“Caring for someone living with dementia at home is not just possible — it can be deeply transformative for families and even lead to better outcomes for everyone involved,” says Dr. Salinas.
In-home care not only provides time and space for you to make more memories, but it also supports your loved one’s continued independence and sense of security in a familiar environment. Dr. Salinas notes that in-home care can reduce confusion and “sundowning” symptoms triggered by unfamiliar surroundings. These benefits directly strengthen your loved one’s mental and emotional well-being, helping you avoid hospitalizations and minimizing the costs of dementia care.
“The key is ensuring you aren’t doing it alone,” says Dr. Salinas. “Caregivers can carry tremendous weight — exhaustion, frustration, as well as the love. With the right support in place, you can provide an elevated level of care without losing yourself in the process.”
When you don’t make time for your own needs, you may be subject to the impacts of dementia on caregivers, so-called caregiver burden, strain, or burnout. These can include:
“Taking care of a loved one can feel like a marathon. It’s natural to face significant hurdles along the way,” says Dr. Salinas, who supports the needs of caregivers as the co-founder of Isaac Health. “The difficulty of juggling personal lives, careers, and the 24/7 demands of caregiving is not one to be taken lightly.”
As you learn how to care for dementia at home, you’ll want to keep your focus on maintaining familiarity. Create a daily care plan to help your loved one feel safe and keep you both on task. Your dementia home care options for each day, as well as your checklist of responsibilities, should include:
Outlining these tasks each day is important, but you’ll also want to allow flexibility in your plan. This permits you time to tackle challenges or other needs that arise.
With dementia being unpredictable, you’ll want to be adaptable to provide the best care of your loved one. Other needs that may arise include managing incontinence, managing legal and financial issues, or navigating symptoms, like agitation or wandering.
As the disease progresses, you may spend more time managing those symptoms and providing emotional support. You’ll want to learn communications strategies to most effectively meet your loved one’s emotional needs. Their Medicare or other insurance may provide coverage for in-home dementia care so both of you can get the help you need.
Medicare offers limited coverage for in-home dementia care, typically through medically necessary skilled nursing services or approved care models like the Guiding an Improved Dementia Experience (GUIDE) Model. Routine daily care and long-term memory care are generally not covered.
As an accepted participant in the GUIDE Model, Isaac Health can help you understand whether you meet the criteria to enroll in GUIDE. For instance, to qualify for GUIDE, your loved one must be enrolled in Medicare Parts A and B and cannot be living in a nursing facility long term. If you have questions, reach out to Isaac Health at 646-594-1679, Monday-Friday from 9 a.m. to 6 p.m. Eastern time.
To provide support for dementia caregivers at home, Medicare uses approved partner organizations to deliver the services of the GUIDE program. Dr. Salinas says to look for an organization with deep expertise and a proven record in dementia care, like Isaac Health.
Through a partner organization, you’ll have access to a team of experts who provide GUIDE services that include care planning, care coordination, medication management, around-the-clock support, coordination of social services, and caregiver education and services.
“Through GUIDE, patients receive Medicare-covered medical services, while caregivers receive the training and respite care they need to stay refreshed and capable of providing essential emotional support,” Dr. Salinas says.
Your partner organization will help you deliver quality, caregiving to your loved one through services, such as:
You’ll gain access to both online and in-person group training programs specific to caring for your patient and yourself. Specialized, one-on-one training may also be available.
One way to care for yourself is to simply take a break. The GUIDE program can provide a set number of respite care sessions each year. During these, a home health aide assumes your caretaking, so that you can take a pause when you need it most.
When you need to talk to someone who can relate to what you’re going through, virtual or in-person support groups can help. Some partner organizations may also offer mental health counseling if you need expert help.
Dr. Salinas says partner organizations provide a structured support system to ensure caregivers never feel like they’re navigating this complex journey alone.
“Monthly check-ins, information on prominent caregiving topics, and access to dementia-trained care navigators who not only listen but also direct caregivers to the right resources at the right time all help to make the day-to-day reality of caregiving feel more manageable and less isolating,” he says.
These resources can help you keep your loved one safely at home:
If you become a GUIDE participant, your partner organization will conduct a home assessment and recommend modifications. These may include adding grab bars in the shower or removing tripping risks, such as wires or rugs. They may also give technology recommendations that help people age in place, like smart locks or activity sensors.
To ensure your loved one makes sound decisions, it’s important to update financial plans as soon as possible after their diagnosis. It’ll be important to evaluate insurance coverage for any unforeseen circumstances to protect their savings. For example, Short-term Care insurance could cover out-of-pocket expenses for extended care due to a fall or illness. Such a policy may also offer benefits for home modifications to prevent future incidents.
If you need help locating reputable resources for financial planning or want to find an in-person support group, Dr. Salinas says he regularly recommends organizations like Area Agencies on Aging, CaringKind, and the Alzheimer's Association® for local support. Isaac Health’s care navigators can also help you get connected with online resources for support.
“It is okay to feel overwhelmed, and it is better to ask for help early on. Programs like GUIDE can help you transition from ‘surviving the day’ to managing the journey,” says Dr. Salinas. “You’re the heart of your loved one’s care, and it’s important that you remain strong, supported, and seen.”
Wellabe has partnered with Isaac Health to help you prioritize brain health and stay independent and sharp for years to come. Visit Isaac Health to learn more.
Photo credit: iStock
When you sign up for Wellabe's monthly email newsletter, you'll receive tips to protect your health and financial well-being in retirement.
Wellabe Rewards was created to thank loyal customers. Every action you take with Wellabe Rewards is a step toward improving your well-being and earning points toward rewards.
Medicare Supplement insurance, a.k.a., Medigap, is supplemental health insurance meant to fill gaps between what’s paid by original Medicare and the overall cost of health care treatments.
Wellabe offers life and supplemental health insurance plans to help you prepare for good days and bad. We’ll always be here to empower you to be well — well prepared and well protected.
