Creating a care plan for your loved one with dementia can give you and your family a way to anticipate and deal with the changes the condition brings. To successfully create a dementia care plan, you’ll need time, a willingness to learn, expert guidance, and an open mind to ensure that your loved one’s plan is well suited to them.

A care plan for dementia can be divided into steps, such as learning about your loved one’s type of dementia, facing logistics such as daily living and safety, sourcing medical care, and handling the emotional needs of all involved. However, there is no standard dementia care plan because each person with dementia and their families are unique.

“What we mostly talk about is Alzheimer’s disease because it is the most common [type of dementia],” says Nancy Alterman, LCSW, a geriatric social worker and a clinical instructor at the New Jersey Institute for Successful Aging (NJISA), part of the Rowan University School of Osteopathic Medicine. But, she points out, there are many other types of dementia. Each form of dementia follows a different course over time and could require different approaches to management, either at home or in a memory care community.

Working with a neurologist to get a correct diagnosis and learning about the type of dementia your loved one has will help you plan.

At this stage, you might want to create a binder or online folder to keep contact information for everyone involved in your loved one’s health care, including medical personnel, information about their type of dementia, and working documents related to the steps you’re taking to create a dementia care plan.

The Alzheimer’s Association provides a lot of information online, offers a free, 24-hour helpline, and hosts support groups throughout the country. Even if your loved one has a type of dementia other than Alzheimer’s disease, you can find information and local support for your whole family through the association.

If your loved one has a type of dementia other than Alzheimer’s, a specialized association for them likely also exists. Some examples include the Lewy Body Dementia Association and the Huntington’s Disease Society of America.

It’s easy to put off planning, either because your loved one has days when everything is close to normal, or perhaps because you don’t want to grapple with difficult questions.

When you plan early, as hard as it is, it’s ultimately beneficial. You’ll already have had some of the complicated conversations and made difficult decisions when your loved one gets into the more challenging stages of the disease. Perhaps the most important reason to start early with creating a dementia plan is that the person with dementia may still be able to express their preferences for care in the future.

Plan around the problems that you and your loved ones are currently facing with dementia. Consider whether you need solutions to problems with:

• Communication: If you’re having trouble communicating with your loved one with dementia, it may be helpful to connect with a dementia care expert for guidance. The best communication strategies will involve empathy, understanding, dignity, and respect.
• Physical Safety: Is your loved one wandering, unsafe around appliances such as gas stoves, or losing their balance and vision? Each safety challenge has its own solution but may involve making home modifications, hiring an in-home caregiver, or moving your loved one to a secure memory care community.
• Medication Management: Can your loved one take their prescribed medications at the right time, and not repeat doses? If not, a home health aide may be beneficial.
• Money Management: Can your loved one still handle money and pay their bills on time? Who will help or take over their finances when they can no longer manage? Be aware that financial scammers may target older adults with cognitive problems, so it’s wise to monitor your loved one’s finances or designate a financial power of attorney to do so.

Take a look at any insurance plans, long-term care plans, veterans benefits, and other dementia care financing options so you know how much money your loved one has available.

If this step is overwhelming, find a professional, such as a social worker experienced in dementia care or a financial advisor who specializes in long-term care, with the expertise to guide you.

Alterman is an advocate for moving to an assisted living community that offers memory care soon after a dementia diagnosis.

“If you go soon enough, you can almost guarantee you will never need a nursing home,” she says. The additional benefit to moving in sooner rather than later is that you will learn your way around the facility before as much damage is done to learning and memory. But, she says, make sure you choose a facility with a memory care wing. “At some point, you will need specialized care.”

However, some families prefer for their loved one to stay home for as long as possible if the family is large enough and close enough geographically to support them. This is a part of the dementia care plan that will likely change over time.

Consider issues such as:

• Who is available to help care for your loved one over time? Are they available to provide care at home, or will they be helping to oversee care at a facility?
• Is it better for your loved one to stay in their current community or move closer to a friend or family member who can help? Are there memory care facilities in the new community?
• What other forms of support are nearby? If your loved one wants to stay home as long as possible, learn about adult day care programs, respite care, and home health care options in their community.
• What will you do if in-home care does not work out? What is the “contingency plan”?

“Home becomes unsafe when someone is big on wandering or is fecal incontinent,” says Alterman. These are two reasons families decide to move a loved one with dementia into a facility, but they are only two possible problems you might encounter as dementia progresses.

Once you know what to expect from your loved one’s type of dementia, everyone involved, including the person with dementia, should talk about what kinds of dementia symptoms would require significant changes in plan, says Alterman. You may need to include your loved one’s doctor in this conversation.

If your loved one does not already have legal documents such as a will, healthcare power of attorney and financial power of attorney, make an appointment with a lawyer whose practice includes elder law as soon as possible. This process should allow your loved one to choose a friend or family member to make decisions on their behalf if they can no longer do so. An elder law attorney may also be able to help with applying for Medicaid and other financial assistance programs for people with dementia.

For many families, dementia care planning can be very emotional. It’s okay to take time to grieve over your changing relationship with your loved one with dementia, and good to practice self-care while creating and carrying out the dementia care plan.

This means staying on top of your own health and fitness and maintaining your relationships and interests. You can find support groups for dementia caregivers on the Alzheimer’s Association website. Taking care of the caregiver will make it more likely that the person who has dementia will be well cared for as well.

You can ask a therapist, social worker, or clergy member for help managing the responsibility and stress that comes with creating a dementia care plan and being a dementia caregiver. Additionally, if you have a full-time job, you may be entitled to leave through the Family and Medical Leave Act (FMLA).

Finally, it’s important to be flexible. While you want to start early and make a dementia care plan, things are going to change over time that may require you to tweak your plan.

It’s a good idea to revisit the care plan for dementia at least quarterly to ensure its effectiveness. If the condition is progressing rapidly, you may need to change the plan more often.