Whether you’re a new or experienced caregiver, caring for a loved one with Lewy Body Dementia can be very demanding emotionally, physically and financially. Providing daily care, adjusting to new family roles and deciding if professional care is the right fit for your family can be tough.
We know that daily care is inevitable for a person with LBD. With a little bit of creativity, compassion and some basic caregiving skills, you will learn how to set and adjust routines, handle difficult situations and provide your loved one with a high level of care. Here are a few tried and true tips to get you started:
1. Establish a daily routine
Setting a daily routine can be very helpful for both you and the individual with LBD. Planning saves you time, gives the person you’re caring for much-needed structure and reduces the stress placed on everyone. When crafting a plan, you should consider how your loved one used to organize their day, what times of day they’re happiest or most active, and which activities they enjoy. Don’t forget to allow plenty of time for meals and personal care. We also suggest setting a regular time for waking up and bedtime — especially if sundowning is an issue. However, the person with LBD will probably need you to adjust to his or her schedule. As an example, a person may not be ready to wake up and have breakfast at 8 am though that’s your preference.
2. Address sundowning and sleep problems before they start
Many people with LBD have trouble sleeping at night or with sundowning, a problem characterized by increased confusion and agitation beginning at dusk and continuing through the evening. Although it is not known what causes these problems, we do know that sundowning and some sleep disturbances such as night wandering can be aggravated by mental and physical fatigue, changes in circadian rhythm, low lighting, and trouble distinguishing dreams from reality. You can help sundowning and some sleep problems by establishing a daily routine, limiting caffeine consumption, using night lights, and by creating a soothing atmosphere at bedtime. Even if the person you care for doesn’t have a specific sleep problem or sundowning, these tips may still help ensure their best night’s sleep.
3. Don’t forget about YOU!
Don’t forget about yourself in the LBD caregiving process. You can’t care for your loved one properly if you neglect yourself! That means addressing medical issues as they arise, maintaining your physical and emotional health and eating and sleeping right. Being burnt out or depressed places additional stress on both you and the person you’re caring for, plus it reduces your quality of life and may prevent you from enjoying meaningful moments with your loved one. Building a reliable support system comprised of family, friends, an experienced physician and other caregivers can help. Contact us today for more information on local support groups and free one-on-one counseling.
My wife is a 20+ year Parkinson’s patient in long term skilled care for nearly 5 years. Quite early on, her neurologist also diagnosed LBD. At times she has exhibited nearly all the symptoms described in the literature extant that I have found. However, anxiety and paranoia are much more obvious of late and her interaction with the nursing facility staff more difficult than she has experienced for some time. I visit her daily for at least 3-4 hours and sometimes longer. Recently, I became very upset at the paranoia (she knew !! the nursing home staff were out to mess around with her medications) and, in anger and frustration, I threatened to stop visiting her or taking her phone calls if she continued. That “worked?” She seemed to snap out of it–although I sense the feelings are still there but just below the surface. I would appreciate some guidance on how I should react to her. My recent seemed to work but made me feel terrible.
Frankly counselors available to us are largely ignorant about LBD as well as PD.
I appreciate you providing some everyday care tips for Lewy Body Dementia such as establishing a daily routine. It is recommended that the caregiver adjusts to the person with LBD to make sure that the former is able to attend to the latter’s needs. You may want to create a daily planner and make sure you are able to adhere to it. Caring for someone with LBD takes a lot of patience, so it’s best that you prepare yourself for the challenge. If I were to offer my services to a person with LBD, I would make sure to keep this in mind. Thanks.
Bobby, thank you for your comment. We are glad you find this article helpful.
Does anyone have a suggestion for containing incontinence? My wife has forgotten where her
Bowel movements belong. I am not particularly squeamish but it does raise my blood pressure to
Find her carrying fecal matter around our townhouse. She balks at establishing any sort of schedule
And I don’t want to resort to wrestling her onto the toilet. Instructions simple or mildly involved
Are met with a blank stare.
So I suppose, my next question is how to approach the subject of a memory care facility with
Her? We have been married 47 years and friends for 50 years. We are both turning 70 this
Year and my health is solid. The psychological separation already established by the LBD has
Prepared me for the physical separation.
Dear David,
Please call our Helpline at 516-218-2028 and we will help you the best we can.