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 illness brings. But you’ll also need time, a willingness to learn and an open mind to ensure that your loved one’s plan is well suited to him or her.
Dementia care planning breaks down into broad categories such as learning about your loved one’s type of dementia, facing logistics such as daily living and safety, medical care, and the emotional needs of all involved. There is no standard dementia care plan, however, because each person with dementia and their families are unique.
“The first thing I want to tell families is that nothing in your life has prepared you to be a caregiver,” 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.
This guide can help you get started with your loved one’s dementia care plan.
Step 1: Know the type of dementia.
“What we mostly talk about is Alzheimer’s disease because it is the most common [type of dementia],” says Alterman. But, she points out, there are many other types of dementia. Each form of dementia follows a different course over time. And each type, in combination with other health conditions your loved one may have, could require different approaches to management, either at home or in a memory care community. Getting 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 that will contain contact information for everyone involved in your loved one’s health care, including medical personnel, as well as information about the dementia and working documents related to the steps you’re taking to create a dementia care plan.
Step 2: Connect with the Alzheimer’s Association.
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 dementia other than Alzheimer’s disease, you can find information and local support for your whole family through the association.
Step 3: Start early.
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.
“We know that when people do plan early, as hard as it is, it’s like giving themselves and their families a gift. They’ve had those complicated conversations, they’ve made decisions, and so when they get into the more challenging stages of the disease, they’ve already talked it through and made a plan,” says Ruth Drew, Director of Family and Information Services with the Alzheimer’s Association. 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.
Step 4: Address current concerns.
Plan around the problems that you and your loved ones are currently facing with dementia. The Alzheimer’s Association offers an online navigator tool to help you plan around your current situation. Consider whether you need solutions to problems with:
- Communication. Is it time for family members and caregivers to get some pointers from a dementia care expert care about how to communicate well with someone who has dementia? Rebecca Axline, a licensed clinical social worker (LCSW) with Houston Methodist Hospital's Nantz National Alzheimer Center, explains that communication strategies will depend on the type of dementia your loved one has. “Someone who has vascular dementia can be triggered to remember things while someone with Alzheimer’s disease can not,” says Axline. In some cases, family members will have to learn how to avoid unnecessary arguments with the person who has dementia.
- Emotional health. “Is the person with dementia dealing with anxiety and frustration, feeling like they are not at home when they are, or are they forgetful and confused but overall very content?” asks Drew. You might need to talk to a doctor or therapist about emotions that make everyday living difficult for your loved one.
- Medication management. Is your loved one able to take their prescribed medications at the right time, and not repeat doses?
- Money management. Is your loved one still able to handle money and balance their checkbook? Who will help or take over their finances when he or she 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.
- Safety. Is your loved one wandering, unsafe around appliances such as gas stoves, or losing their balance and vision? Can your loved one drive safely alone? Each safety challenge has its own solution.
- Sleep. Is your loved one’s sleep pattern changing? How is that affecting family life? Significant sleep changes can accompany some dementias.
Step 5: Find out how much money and coverage is available for care.
Take a look at any insurance plans, long-term care plans 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, with the expertise to guide you. In some cases, the details of coverage for dementia care could determine where your loved one will live.
Step 6: Figure out where your loved one will live now.
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 too 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 day care programs, respite care, and home health care options in their community.
Step 7: Identify situations that will force change.
“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’re 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.
Step 8: Talk to a lawyer.
If your loved one does not already have legal documents such as a will, living will, healthcare power of attorney and financial power of attorney, make an appointment as soon as possible with a lawyer whose practice includes eldercare law. This process should allow your loved one to choose a friend or family member to make decisions on their behalf if they are no longer able to do so.
Step 9: Ask for help if you need it.
By the time you tackle the first eight steps, you’ll likely know if you or your family need someone to guide you. Axline points out that for many families, dementia care planning can be very emotional. “It’s fine to say that maybe this is just too emotionally connected and you need to get outside help,” she says.
The center where Axline works facilitates family meetings to try to help everyone involved share their concerns and preferences. You can ask a therapist, social worker, or clergy member to help organize and run these family meetings. She points out that family members may also need individual therapy if the process of dementia care planning is triggering strong emotions and conflicts.
Step 10: Take care of the caregiver.
Axline recommends taking time to grieve over changing plans and relationships, and to practice good self-care throughout the dementia care planning. This means staying on top of your own health and fitness, and maintaining your relationships and interests. Taking care of the caregiver will make it more likely that the person who has dementia will be well cared for as well.
Finally, be flexible.
“You want to start early and make a plan, but then things are going to change over time, so you might need to tweak your plan,” says Drew.
It's a good idea to revisit the dementia care plan at least annually to make sure it's working well. If the disease is progressing rapidly, you may need to change the plan more often.