8 Tips on Coping and Living Life with Lewy Body Dementia

Quality of Life in Dementia
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Living with Lewy body dementia (LBD)? Sometimes, a road map in life can help with the next steps. Use these 8 tips as a starting point in the challenge of not just coping with LBD, but also in living life as fully as possible with LBD.

1. Educate the Person with Lewy Body Dementia

One gentleman shared his story of the early symptoms he experienced and his relief at reading and learning everything he could about Lewy body dementia.

He found it encouraging and helpful to know he wasn't the only one out there experiencing this disease and he learned how others coped with the challenges of his disease, especially the hallucinations.

2. Educate the Caregiver

One of the challenges in dealing with Lewy body dementia is that it's much more of a mystery to many than Alzheimer's disease is. Knowing what to expect is important in coping with Lewy body dementia.

For example, if you're aware that occasional episodes of fainting (syncope) or a sudden loss of consciousness are not uncommon in Lewy body dementia, you may be able to feel a little less stress when this occurs since you already know it's likely due to Lewy body dementia and not some additional condition.

3. Focus on the Good Days

Lewy body dementia is characterized in part by its fluctuations in ability and functioning.

Unlike Alzheimer's disease, where there's typically a slow and steady decline over time, Lewy body dementia can have a much greater variation of good days and bad days. Going into each day with the awareness of the possibility of a bad day but the continued hope for a good day can impact your mood and provide you more mental energy to cope with whatever it is that the day brings.

Don't let the bad days blot out the good ones, both as you live them today and also as you remember them.

4. Take Care of the Caregiver

This is often the hardest and most important step to coping successfully with dementia. Caregivers may feel like they don't have an option for respite care, that they're locked in to providing 24 hour care and that no one else can do things like they do for their loved one. However, it's just not humanly possible to do the job of caregiving well without taking a break once in a while.

Running on empty and then getting sick, losing your temper with your loved one in exhaustion and frustration, or letting other relationships and support disappear all are detrimental to your ability to care excellently for your loved one.

5. Emphasize the Abilities that Remain

Instead of thinking about and talking about all of the things that have been lost- which are many- identify those that are intact and provide opportunities to use them, even if it's in a modified way.

For example, I know a gentleman who was an architect. His wife brought in a scrapbook that contained many pictures of the buildings he designed. He really enjoys going through those photos and talking about the work he did. Another gentleman was an artist, so an art work station was set up for him to be able to continue to create art and use his abilities.

These types of experiences help people feel valued and useful. Almost as importantly, they can help the caregivers see the individual as a gifted person who is living with dementia, instead of someone to whom they are simply providing care.

6. Be Wise in Which Battles You Choose

Hallucinations are very common in Lewy body dementia. How you respond to these hallucinations can make or break the day. Often, it's not worth arguing with the person about the inaccuracy of what they're "seeing" or "hearing" since to them, it's very real.

7. Be Intentional about Scheduling Activities

Especially if you're caring for your loved one 24 hours a day at home, it can be hard to make the effort to go out to do special things. However, especially in the earlier stages of Lewy body dementia, having something to look forward to- for both the caregiver and the person with LBD- can help increase the enjoyment of life.

Judy Towne Jennings, who wrote a book on caring for those with LBD after caring for her own husband, recommends these special outings and quality of life factors and says that they helped provide both of them with a reason to "get out of bed each morning." 

8. Physical Exercise

Physical exercise has been repeatedly recommended as a way to prevent, slow down and treat dementia. This includes Lewy body dementia. Exercise has also been shown to decrease stress and provide both physical and emotional benefits. Especially in LBD, where falling is such a high risk, exercise can help maintain functioning and reduce the likelihood of injury when falls do occur.

Sources:

Lewy Body Dementia Association. Missing You Sooooo Much! Coping with the Transitions of a Spouse with LBD. http://www.lbda.org/content/coping-transitions-spouse-lbd

Sharing Mayo Clinic. Coping with Lewy Body - Part 1. Aug 17, 2011. http://sharing.mayoclinic.org/discussion/coping-with-lewy-body-part-1

University of Cincinnati, College of Medicine. UC Neuroscience Institute. Coping with an Unwelcome Disorder: Lewy Body Dementia. March 15, 2013. http://ucneuroscience.com/blog/coping-with-an-unwelcome-disorder-lewy-body-dementia/

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