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It’s not a topic many of us want to think about, but the longer we live, the more our chances of getting dementia increase. After age 55, each of us has about a 42% risk of developing dementia in our lifetimes, according to recent research. As the number of people living into older age grows, the number of Americans living with dementia is growing as well. Researchers estimate that by 2060, about one million Americans will be diagnosed with dementia each year.
These are scary statistics, but knowledge is power, and one of the best ways to manage the possibility of a dementia diagnosis for yourself or a loved one is to make a care plan for dementia. “Even if you aren’t at high risk, planning is still a good idea,” says Dr. Joel Salinas, cognitive-behavioral neurologist and chief medical officer of Isaac Health. “Having a plan in place can prevent stress for loved ones and help ensure the best quality of life.”
Here, we’ll cover what a dementia care plan is, what it should include and other expert-driven tips for managing dementia planning and caregiving.
Key takeaways
- A dementia care plan outlines your care preferences and medical and legal directives in the event of a dementia diagnosis.
- You should consider making a dementia care plan whether you are high-risk or have an average risk.
- Your care plan for dementia should designate a power of attorney, provide instructions for long-term care and include financial planning.
What is a dementia care plan?
A dementia care plan, sometimes referred to as a nursing care plan (NCP) for dementia, is “a guide that outlines how someone wants to be cared for if they develop cognitive impairment,” says Salinas. It includes personal care preferences, medical wishes and financial and legal information.
It’s essential to take care of these things before dementia hits, explains Pooja A. Patel, an occupational therapist who’s board-certified in gerontology and the founder of Aging Together. “Dementia results in the gradual loss of decision-making capabilities, which means that during crucial emergencies, someone with dementia may not be able to make informed decisions.”
Who needs a care plan for dementia?
Most people need to consider having a dementia care plan in place, particularly if they have a higher risk of developing dementia. Major risk factors for dementia include:
- A family history of dementia or a known genetic risk.
- Certain health conditions and lifestyle factors, including high blood pressure, diabetes, hearing loss, history of smoking, history of traumatic brain injury and obesity.
- Certain demographic identities, including Black Americans, Native Americans and women.
However, even if you don’t have any of the risk factors above, age alone is the most important risk factor for dementia — the older you get, the more likely you are to experience it. “There’s no such thing as ‘no risk’,” Patel emphasizes.
“It is extremely difficult for those family members to make decisions for the person with dementia if they’ve never discussed their wants and needs prior to that day.”
— Pooja A. Patel, occupational therapist and founder, Aging Together
What to include in a family care plan for dementia
A family care plan for dementia should include all of your preferences related to care, finances and legalities. This way, your family members will know what to do if you start showing signs of dementia.
“Outline what type of support you’d be open to, who you want making those decisions, how you want them to pay for it and how you want to live out your final years when you can no longer support yourself,” Patel explains.
When a person’s decision-making abilities diminish, family members have to step in and make critical decisions regarding things like finances and legal issues. “It is extremely difficult for those family members to make decisions for the person with dementia if they’ve never discussed their wants and needs prior to that day,” Patel adds.
Documents to include in a dementia care plan
According to Patel, some of the information and documents you should prepare as part of your dementia care plan include:
- Healthcare power of attorney (HCPOA).
- Financial power of attorney (usually durable POA).
- Trusted legal and financial contacts, such as an accountant or lawyer.
- Advance directive for all healthcare goals.
- End-of-life care plan.
- Post-death arrangements and funeral plans.
Depending on your state, some of these documents (for example, a health care proxy and simple power of attorney) may be found online and easily filled out on your own. Check your state government’s website.
Help for completing your dementia care plan
An elder care attorney can help with preparations for end of life care. In addition to getting help from a professional, you should also make a simple list of preferences and notes that you share with your family members.
Additionally, doing some financial planning is key, says Salinas. If possible, you’ll want to ensure that you have money in the bank to cover future care, whether it will take place at home or in a facility.
If you will be using other means of covering long-term care — such as long-term care insurance or life insurance — you’ll want your loved ones to have this information handy. If you have questions, reach out to a financial planner who has experience with seniors.
What to include in a nursing care plan for dementia
In addition to providing your family with information about finances, lifestyle wishes, legal information and other preferences, you will also want to think carefully about the type of care you might want as dementia advances. Any caregiver you work with will need a plan that outlines your needs, preferences and wishes for future.
According to Patel, a nursing care plan for a patient with dementia — or someone who may have dementia in the future — should include:
- Preferences about where you’d like to receive care, such as in-home care vs. care in a facility.
- Any specific support agencies or facilities you’d like to receive care from, such as a memory care facility or nursing home.
- What type of in-home support you’d be open to (meal services, cleaning services, companion care, home health services, etc.).
“I also recommend including a list of people you want or don’t want involved in your care,” Patel says. “Family dynamics can be tricky, so it’s important to know who you want and don’t want near you or involved during a vulnerable stage of your life.”
“Having a clear caregiving plan can reduce confusion and make care more person-centered and effective.”
— Dr. Joel Salinas, cognitive-behavioral neurologist and chief medical officer, Isaac Health
What to have in place for dementia caregivers
Make sure your care preferences and vital information is available to your loved ones and any professional caregivers you might have, says Salinas. A nursing care plan for patient with dementia might include:
- Instructions on daily routines.
- Preferred ways to maintain social connections.
- Communication preferences.
- Preferred comfort measures.
“As the disease progresses, care needs will change, so the plan should be flexible,” Salinas adds. This may include allowing family members or caregivers to decide (in conversation with medical professionals) when it’s time to move to the next level of support, such as memory care or assisted living.
“It’s time to transition to a higher level of care when safety becomes a concern, when daily tasks become too difficult or when caregiving becomes overwhelming for family members despite supports that have been put into place,” Salinas explains. Your loved one’s doctor is an important resource here, and should be able to help you decide when a change in care plans is appropriate.
“Having a clear caregiving plan can reduce confusion and make care more person-centered and effective,” Salinas says.
How to handle a new dementia diagnosis
Sometimes dementia diagnoses can come rather suddenly. Even if you are prepared for this diagnosis, it can be a lot to digest. Patel says that educating yourself about dementia and offering support to your loved ones are two main actions family members and caregivers should take after a dementia diagnosis.
“People often feel very vulnerable at that stage, sometimes in denial, sometimes in shock and sometimes angry,” says Patel. “It’s important to meet them where they’re at and offer what they need in that moment — clarity, knowledge, decision-making assistance or simply a shoulder to lean on.”
If you or your loved one haven’t yet made a dementia care plan, now is the time. “Making a care plan immediately following a new diagnosis is often the best time to do so if not done prior to it,” Patel says.
The final word on preparing a care plan for dementia
No one wants to think about the possibility of getting dementia, but everyone who lives long enough should consider it. Making a dementia care plan can ease some of the stress and uncertainty about a potential diagnosis for both the person being diagnosed and their loved ones.
“Planning ahead makes these transitions smoother and helps ensure that care decisions align with the person’s wishes,” Salinas concludes. “Having these details in place helps families avoid uncertainty and ensures that a person’s values and choices are honored as their needs change.”
