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Part 3: Expert Advice When Caring for a Loved One with Lewy Body

This is the third installment of a three-part series featuring direct advice from an experienced, tenured home care administrator. Be sure to check out parts one and two for specific care information for loved ones with dementia and Alzheimer’s.

Lewy body dementia is a term that includes multiple forms of dementia including Parkinson’s Disease and dementia with Lewy bodies. It occurs when protein deposits called Lewy bodies form on the brain and causes mental and emotional issues. While it shares symptoms with other forms of dementia, the early stages can also have similar symptoms to mental diseases such as schizophrenia. Over one million people in the USA suffer from some form of Lewy body.

A Lewy body dementia diagnosis can be overwhelming. But you're not alone. Debra Desrosiers has been in the home care industry for over 14 years. She is a certified trainer and consultant in dementia and Alzheimer’s issues, and has volunteered with the Alzheimer’s Association for over a decade. These are her expert tips to help a loved one with Lewy body.

1. Educate Yourself

Talk to your loved one’s doctors and medical professionals and get all the information you can about the form of Lewy body your loved one has. Make sure the doctor has all your loved one’s symptoms and ask how she arrived at the diagnosis. If your loved one hasn’t seen a neurologist, it may be worth arranging a visit. There are many forms of dementia, and each can exhibit different issues. So, it is important that your loved one receives the appropriate treatment.

Once you have a firm diagnosis, learn everything you can about the disease and where it may be headed. Knowing what’s coming can be incredibly important when it comes to planning future care. Read up online or speak to experienced healthcare professionals; get as much information as you possibly can.

2. Prepare for Falls

One of the symptoms of Lewy body dementia is diminished vision. Poor vision can be a factor in senior falls. Falls are the number one cause of injuries in seniors annually. The Center for Disease Control (CDC) says that one in four seniors suffer a fall every year. Suffering from dementia, issues with movement and poor vision are all fall factors, so seniors with Lewy body are particularly at risk.

“Plan the environment around your loved one,” advises Debra. “Minimize clutter and fall-proof the house, adding handrails, grab bars, non-slip adhesive strips or anything else that may help.”

3. Medication Can Help

Although Lewy body and other forms of dementia are progressive diseases with no cure, medication can help in lessening the symptoms. One symptom of Lewy body that can be particularly upsetting, for you as well as your loved one, is the possibility of hallucinations. “One patient lived in fear of ‘the man’ who would come into her room and was constantly asking us to hide the children,” Debra shared. “She was living in fear all the time, which was terrible. If you can fix the symptoms, fix them.” Remembering to take medication can be hard for seniors with any form of dementia, so learn about ways to remind your loved one when medication is due.

4. Don’t Ask Too Many Questions From Your Loved One

Debra advises caution when approaching your loved one with too many inquiries. “A lot of anxiety in seniors’ lives can actually be brought on by loved ones,” she adds. “They'll tell us 'I wish they wouldn't ask me so many questions.'" It's understandable that family members are concerned that a loved one will forget them, but constantly asking “Do you remember me?” can be counterproductive. “It’s very demeaning. It causes seniors frustration, and it can be very upsetting to them."

5. Be Warned of Wandering

Six in ten seniors with dementia will wander. Wandering occurs when the senior gets confused for a period and leaves the house. Seniors can become disorientated, forget where they live or even who they are. This can be very dangerous. With wandering, however, forewarned is forearmed. Be aware that it might be a possibility during your loved one's illness and make plans to prevent it, such as alarming doors, having your loved one wear a watch with GPS location and making sure he or she is supervised if necessary.

6. Consider a Professional Caregiver

Professional caregivers could be a big help, both to your loved one with Lewy body and to you. They may have had experience of dealing with seniors with similar issues. They can help with fall prevention and supervise your loved one to minimize the risk of wandering. They can also supervise the taking of medication, although they cannot administer the medication themselves. Best of all when a professional caregiver is with your loved one you can relax in the knowledge that he or she is in great hands.

7. If Possible, Connect Your Loved One With a Like-Minded Caregiver

If you do hire professional assistance, the relationship between your loved one and his or her caregiver will be significant, and hopefully, a long-term relationship in his or her life. “When we match a caregiver with a senior, we look at things like geography but we always look at personalities too,” says Debra. “If your dad isn’t much of a talker, we’re not going to match him up with a chatty Cathy. But if we have a retired teacher and your loved one was a teacher, or maybe there is a caregiver who is Catholic and that is something that is important to your loved one, or maybe they both grew up in the same place, then that could be something that sparks a connection. We do everything we can to match your loved one with someone who he will form a bond with.” If your loved one gets along with the caregiver, it can minimize stress, which will help with your loved one’s condition.

It's essential to plan, but the truth is that even arriving at this diagnosis requires a thorough medical evaluation. For more information about the full diagnostic process surrounding a dementia diagnosis, click here.

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