Every 65 seconds, someone in the United States is diagnosed with dementia. Statistically, it’s common, but in reality, each family’s experience is just as unique as they are. There is no single “right way” to handle a dementia diagnosis.
However, there are countless decisions to be made as you begin to navigate the reality of your loved one’s condition. You may feel like it’s your sole responsibility, as the person who knows them best — but nobody becomes an expert on dementia overnight, and you probably feel under-prepared and overwhelmed.
You don’t have to deal with this alone. San Francisco’s Institute on Aging has created Companoia, pronounced come-PAN-yuh, a comprehensive set of programs to support dementia patients and their caregivers. Through caregiver coaching, adult day programs, home care, and care plan management, they provide information, connection, and emotional support for every step of the journey.
Learn what to expect with Alzheimer’s disease vs. other forms of dementia:
Dementia is the umbrella term for a wide range of symptoms caused by a loss of cognitive function over time. Many people are familiar with Alzheimer’s disease, the most common form of dementia, which is primarily defined by memory loss, but there are other forms as well. Lewy body dementia, vascular dementia, and frontotemporal degeneration can result in personality changes, language impairments, trouble with coordination, and more. Your family member's treatment plan and support needs will depend on which type they have been diagnosed with.
In general, there are seven stages of dementia, but symptoms and behaviors can vary widely from person to person. Patients will need different levels of support as dementia progresses, which is why it's important to consult regularly with a dementia specialist to create and then update your care plan. Managing dementia symptoms is a complex and ever-evolving process.
As part of Companoia’s care management services, they offer assistance with long-term planning, support with medical appointments, and more. If looking ahead to make a plan for your loved one’s future feels overwhelming, a Care Manager can help put you on the right track.
Make a care plan for the future:
In the earliest stages of dementia, your loved one will probably be able to live independently, drive, and socialize, but at this point, it’s a good idea to sit down together and come up with a game plan.
Ensure that all financial and legal documents are in order, and talk to them about important decisions that they may not be able to make independently in the future.
This is also the time to consider care options. At first, people with dementia may be able to live independently, but as symptoms progress, they may need additional support. In the later stages of dementia, patients will need 24 hour care. This involves helping with eating, bathing, and using the bathroom.
There are a variety of options for each stage of symptoms, including memory care communities, adult day care programs, and assisted living homes for dementia patients. Compare options and make a plan together.
Watch for new symptoms of dementia:
As dementia progresses, you might notice more changes in a patient’s behavior and personality, such as agitation, forgetfulness, and trouble sleeping. They may need more help with everyday activities and day-to-day tasks.
While many people with dementia choose to live independently for as long as possible, they may struggle with remembering to eat or take medications, and they may need to modify home routines to account for safety hazards. At this point, even if they don’t need full-time care, it’s important to make sure they have additional support — whether from you, or from a home care aide.
Companoia’s home care services start with a consultation and an individualized care plan, helping you determine when and how they need assistance, with the goal of prioritizing a patient’s dignity and autonomy. Certified home care aides can help with everything from housekeeping and grocery shopping to companionship and exercise.
Home care services also include regular consultations, so you can be sure your family member’s care plan is updated as needed to address new or developing symptoms.
Become a caregiver:
Over 11 million people in America care for a family member with dementia. If you think that’s the best choice for your family, it’s important to get support and training as you adjust to your new role. Make sure you have a clear idea of what dementia caregiving entails. While it may be the best option for financial reasons, or for your loved one’s comfort level, it can be stressful and overwhelming, especially at first. If you do intend to provide care for a dementia patient, there are support groups and training programs that can help you feel more prepared for what's ahead. Companoia offers caregiver coaching, which includes everything from home safety evaluations to caregiver education sessions and support groups.
They can help you develop strategies not only for handling symptoms and care needs, but also for coping with the mental and emotional stress of caregiver responsibilities.
Find an adult day program:
It’s important for both caregivers and patients to feel connected to a community, and to remain engaged with activities outside the home. Adult “day care” can be the perfect opportunity. Patients can socialize and be active in a safe environment tailored to their needs, while caregivers can take a well-deserved break.
At the Institute on Aging’s Enrichment Center in the Presidio, Companoia’s adult day program offers a variety of activities for people with dementia, providing intellectual, physical, and creative stimulation. This sort of engagement can have a dramatic effect on their quality of life; patients often see “improved mood, an increase in mind and body activity, slowed cognitive decline, better sleep and wake patterns, as well as a reduction in isolation and loneliness.”
Caregivers can also experience a sense of isolation in their day-to-day life, and Companoia’s adult day program can help their mental health as well. They can have a moment to rest and recharge, but they can also access educational resources and connect with others who will understand what they’re going through.
Enjoy the time you have with your family now:
A dementia diagnosis might make you focus on (and worry about) what your family member’s future holds. Anxiety can make it difficult to live in the moment, especially if you feel overwhelmed or under-prepared.
Don’t let that stress get the better of you. You don’t have to make these decisions on your own; if you’re struggling with the weight of what the future might hold, ask for help. Healthcare professionals can help you with a care plan and alleviate the stress of decision-making so you can focus your attention where it matters.
It’s important to plan ahead, but once you take these first steps, it’s just as important to enjoy the present.