12 Steps to Take After a Lewy Body Dementia Diagnosis

by Kathy Teyler Jarrett

You’ve gotten at least a tentative diagnosis, so what do you do next? Next steps may seem daunting, but there are things you can and should do now – even if you feel in a fog. Do the first 3 sooner rather than later. If you have done some of these already, great! 

1. Get a good specialist for your loved one.

If you don’t already have a neurologist, psychiatrist or psychologist you trust, find one who knows something about Lewy Body Dementia (LBD) or is willing to learn, whom you feel comfortable with, and who will communicate with you and work with you about medications and treatments. It may take a while to find a good one. We have a Research Center of Excellence for LBD diagnosis, treatment and research: OHSU Neurology.

2. See an Elder-Law Attorney.

You need Powers of Attorney, both medical and financial, an Advanced Directive and a will if you don’t have one yet, and you need them SOON. Your loved one has to be able to understand and sign the papers. An elder-law attorney knows the ins and outs of these issues better than any other legal representative. Plus he or she can give you some ideas about Medicaid and other issues you may face down the road. 

3. See a financial planner or advisor.

If you don’t have many funds for future treatment and perhaps long-term care, you need advice about Medicaid and the tricks for applying for it, about how to budget and use your assets wisely. This is especially important if you are a spouse or child of the one with LBD and young enough that you will need your own retirement funds. Get a fee-only advisor if you are worried about ongoing fees. 

4. Ask for help.

Line up family and friends to assist you with anything you can think of —providing meals or grocery shopping, cleaning, staying with your loved one, helping you with research and appointments, etc. Whatever needs you have are only going to multiply, and if you can line up people now, it will save you energy later. Ask specific people for specific help that you think they are good at or might not mind doing. Ask multiple times. Set up a family meeting to discuss this and other issues. 

5. Line up respite care.

Whether or not you have help in the home, you will need time off for yourself—the social worker who helped found our group said you need a MINIMUM of four hours a week for yourself. Not for doing errands or chores but things you like, that refresh and energize you, like lunch with friends, keeping up with hobbies and activities, getting out into nature. Find an adult daycare or in-home respite care. 

6. Research long-term care facilities.

Yes, you may want to keep your loved one at home, but things happen, and it may not be possible forever. Research now, when you don’t need them, so you are aware of what’s available and which kind of facility you like or not. Google “long-term care placement agencies in my area” to have them narrow down the options that fit your needs and budget.

7. Get products you need.

There are many products available to help with safety, mobility, eating, hygiene needs. Look it over to see what might help you now, and refer to it later when other needs arise. You can order a lot over the Internet, but many things are available locally too. You will likely need more items as the disease progresses. See sites such as the Alzheimer’s Store online, or MedLine and other medical equipment sites. Ask an Occupational Therapist for ideas. 

8. Locate other specialists.

Physical Therapist can help evaluate your loved one and give exercise suggestions or help decide when he/she needs mobility aids. A Speech Therapist can help with speaking and swallowing. An Occupational Therapist can evaluate your home for safety and efficiency and offer suggestions of tools and techniques to help you care for your loved one. A Social Worker or Case Manager can help you get through the medical system and find resources you need. A Nutritionist can help you figure out the best diet at different stages. 

9. Consider how to re-arrange your home.

If your loved one has mobility problems, you should remove all throw rugs and perhaps rearrange or reduce furniture for ease of movement. You may need to add products to the bathroom such as bars or a shower seat or totally redesign it. Meals might require some added products like a pad under the chair for easy cleanup. The bedroom may need to be moved downstairs and products installed for safe sleeping, such as a hospital bed and bed alarm. 

10. Figure out diet and exercise programs that work for your loved one.

The Mediterranean diet is proven to help health, or even just cutting down on fats and sugars can be good. Later in the disease, your loved one may need pureed foods or may only taste sweets, so you will have to adapt. Look into exercise classes such as those at Parkinson’s Resources, the BIG and LOUD programs, or Rock Steady Boxing to keep your loved one limber and strong as long as possible. A Physical Therapist can also give you a routine to do at home.

11. Take care of your own mental and physical health.

Keep up with exercise, or start it. Try meditation or deep breathing. Try to eat well and not fall into emotional eating. Don’t resort to alcohol or drugs to get you through the stress. Get advice from your doctor or see a therapist or counselor if the burden becomes heavy. The saying goes, You can’t fill a cup from an empty vessel. You must be healthy to be a good caregiver. You deserve it.

12. Find all the sources of emotional and practical support you can.

You can find whether there is a local support group near you on the LBDA.ORG site under Support. Or there are Facebook groups you can join to get support any time. If you are a spouse, check into this one sponsored by the LBDA: https://groups.io/g/LBDCaringSpouses

There are several other Facebook groups, including Lewy Body Dementia Care Partners at https://www.facebook.com/groups/LBDACarePartnerSupportGroup, and Lewy Body Dementia Carers, at https://www.facebook.com/groups/lyndseywilliams/. Keep relationships and your support system healthy. Get counseling if it would help. 

The Alzheimer’s Association offers peer-or professionally led groups for caregivers, individuals living with Alzheimer’s and all dementia, including LBD, and others dealing with the disease. All support groups are facilitated by trained individuals. Many locations offer specialized groups for children, individuals with younger-onset and early-stage Alzheimer’s, adult caregivers and others with specific needs. Learn more online at https://www.alz.org/help-support/community/support-groups

For more information about the Lewy Body Dementia support group in Oregon, contact Kathy Teyler Jarret at kteylerjarret@comcast.net.

Lewy Body Dementia Association (LBDA) is a nonprofit organization providing information and assistance to individuals with the disease, caregivers and medical professionals. Call LBDA at 800.539.9767.

The Alzheimer’s Association can help you learn more about Alzheimer’s and other dementias, and help you find local support services. Call our 24/7 Helpline at 800.272.3900.

The Social Security Administration (SSA) has a “compassionate allowance” program in which workers diagnosed with Lewy body dementia can qualify for Social Security disability benefits. Call the SSA at 800.772.1213.

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