Tips and Tools for Loved Ones with Lewy Body Dementia in the Later Stages. Equipment
Lewy Body Dementia is a progressive disease affecting the brain, nervous system, and the body. It is a heart-wrenching process for both the patient and the family.
I am attempting to list several useful items of equipment necessary for dealing with the later stages of this disease.
To learn more about what Lewy Body Dementia is you may see This article from Mayo Clinic and This article about Caring for a Person with Lewy Body Dementia , and This article explaining about Dying from Lewy Body Dementia
To learn more about the stages and progression, see this page
AdIn the later stages of Lewy body dementia, extreme muscle rigidity and sensitivity to touch develop. People need assistance with almost all activities of daily living. Speech is often very difficult and may be whispered. Some people stop talking altogether.
Lewy body dementia typically causes the individual to become very susceptible to pneumonia and other infections because of weakness.
It is impossible to predict how long it will take to progress through any stage of Lewy body dementia. According to one study, end-stage Lewy body dementia could last between two months and one year. For some people, however, death may occur quickly and unexpectedly.
Source: Very Well
Useful Tools for Patients with Lewy Body Dementia
I can share what had been helpful for our family. A year ago, I shared some things that we found to be quite useful for Dad in his earlier stages of Lewy Body Dementia. See Meaningful Gifts for Someone with Lewy Body Dementia
This list is for the later, end stages. Later in this series I will provide a list of ideas to use in the middle stages, when the disease is progressing, but when your loved one is still up and around.
Support
If I can help you in any way through what I’m sharing, I am happy to. This is a rough journey. If you’re searching, you want practical things to get, and you don’t want to waste your money on useless items.
These items will apply to anyone who is bed bound, but especially a person with dementia, who becomes unable to communicate his or her needs, or who just can’t function like before.
Dementia is a lonely journey. 
Equipment for Lewy Body Dementia, Late stages
When your loved one reaches the later stages of Lewy Body Dementia or other dementia-related sickness, your primary focus will be on keeping them safe, comfortable, and to prevent skin breakdown and illnesses related to being bedbound, such as pneumonia.
I will list the helpful tools for your Lewy body dementia loved one as follows:
- Equipment, Part 1
- Comfort/safety tools, Part 2 (in the next post in the series)
- Eating/drinking tools, Part 3
- Tools to preserve quality of life and spark memories, Part 4
Many of these categories will overlap, and you’ll probably find that before you’re at the end of your journey, you have everything listed here, and more!
I am noting which tools that Hospice provided for us with an asterisk. I find that knowing what what you can ask for is very helpful. My philosophy is that the squeaky wheel gets the grease, so if you have a need, just ask. You know what your loved one needs because you are caring for him. A nurse who comes once a week simply cannot know everything you will need on a day to day basis. Ask, ask, ask!
Equipment for Lewy Body Dementia Loved Ones
Not an exhaustive list, but it’s a start.
*Hospital Bed. This makes getting your loved one in/out of bed possible, plus elevating the head and alternating position is essential when your loved one cannot do these things for themselves.
Elevating the head of the bed also helps to reduce the risk of aspiration.
You may not have to purchase one. Hospice or your medical supply company will likely provide/rent you one.
*APP pad for bed. Alternating Pressure Pad.
?Wheelchair with gel cushion pad. We already owned one, but hospice possibly would have provided one.
For the wheelchair, a thick foam pad makes getting in and out easier.
*Bedside table. This needs to be adjustable and on wheels.
Baby monitor. Use one of you find it helpful. We didn’t end up using one since the house was small enough to hear almost anywhere. But if you go outside, it’s nice to have the peace of mind, knowing you can monitor your loved one.
There are many types. Some have video, some are all audio, and some even have the option of two way communication, which is nice. Look for the features that you will use and skip those that don’t pertain to your needs.
Pool noodles or thick blankets to pad side rails. Make a slit in the pool noodle and slip it over the railing. You can get a pool noodle at most dollar stores or Walmart in the pool department.
Gait belt with handles. Also doubles as a seatbelt while your loved one is up in a chair.
Foot Stool. Helps to keep the feet comfortable, but also helps to keep the loved one from slipping down in the chair by bracing his feet.
Sheet lifter for feet. Pressure sores can appear very quickly when a person is immobile. Even having the sheets and blankets pressing down on the tops of the feel can cause ulcers, which cause pain and can lead to infection. There are several types of blanket lifters, but this is the type that allows no barriers around the feet.
*Hoyer lift This device will save your back if you are trying to get your loved one up from the bed and into a wheelchair. It’s a strong sling suspended on an equally strong frame. I will say that it’s way easier to use on hard floors than carpeting.
Bath chair. We used this while Dad was up. Once bedridden, it’s not useful, but in the later stages before becoming bedridden, this sliding chair is very useful and comfortable.
Bidet. Same as above, this tool is very helpful while the loved one is still able to use the toilet. It makes cleanup way easier. Get one with warm water if possible, to avoid the shock of cold water.
*Oxygen concentrator and tubing/masks if needed. Your loved one will possibly (probably) need oxygen before the end. Have plenty of distilled water on hand to add to the reservoir.
Portable PulseOx. Helps you to monitor you loved one’s oxygen status.
These tools for Lewy Body Dementia will work with any person with dementia or who has become bedridden. I will be expanding on this list, with the next post in the series addressing Items for Comfort and Safety.
Be sure to keep following to learn the next items to use for your Lewy Body Dementia loved one.
And follow the blog to stay abreast of our own progress too. Use the button below to follow Ridge Haven Homestead.
As you care for your loved one with Lewy body dementia, I hope you find that these tools are useful.
Be sure to give yourself and your loved one grace in this time of change, and cherish every moment.
Follow our journey by reading some of these posts:
Your father was very lucky to have you take care of him and be at his side during this scary time. My grandmother suffered from dementia in the 80’s and 90’s, even having brain surgery in the 80’s. However, the surgery seemed to not work, if not make it worse. My grandmother lived with us for a period of time, and many of these products could have helped us. Bless you.
Thank you.
My mother in law also had brain surgery, as did my grandmother. They were not the same afterwards either. The brain is a delicate organ. It’s hard when it misfires.
God bless.
Dementia is a tough thing for families…We keep remembering the dynamism that obtained before and try to reconicile the present with the past.
I had to look up dynamism.
It certainly is a challenge n
This is such a devastating illness, my neighbor’s husband had it and it was so heartbreaking for his loved ones. You dad was so lucky to have you there for him, when my mom was diagnosed with Alzheimer’s in the 90’s that’s what brought us to SC to help take care of her. What you did was indeed a challenge but I’m sure you have no regrets. Hugs to you.
I am grateful to be able to work with him during this time. It’s hard, but sometimes humorous, and that keeps it all good.