Persons in late-stage dementia are almost totally dependent, confined to a wheel chair or a bed, and have serious memory problems and physical complications. In India, care for persons in this stage is usually done by family caregivers, and can be very challenging.
Dr. Soumya Hegde is a Bangalore-based Consultant Geriatric Psychiatrist. She has extensive experience in supporting people with dementia and their families through all stages — for persons living in full-time facilities as well as for persons being cared for at home by their families. Dr. Hegde completed her training in Geriatric Psychiatry in the UK. Her work experience includes seven years as Associate Director of the highly reputed full-time facility, Nightingales Centre for Ageing and Alzheimer’s (Bangalore). In this series of posts, Dr. Hegde discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions.[note]
In this and the remaining parts of this interview series, we discuss specific care topics. Below, we discuss bruising, skin care and circulation, exercise, massage, and bedsores.
Questions/ Comments by Dementia Care Notes: Most persons in late-stage dementia are bedridden and dependent. How does bed-ridden care for someone with dementia differ from bed-ridden care for other persons?
Dr. Soumya Hegde (Consultant Geriatric Psychiatrist): A major difference is the level of understanding and cooperation shown by a non-dementia person compared to what someone with dementia shows. A normal person may understand what we are doing and why, and help by cooperating, or at least they may not push us away. But someone with dementia may not understand, which makes the tasks more difficult.
A normal person may understand what we are doing and why, and help by cooperating, or at least they may not push us away. But someone with dementia may not understand, which makes the tasks more difficult.
Some additional issues are more common in dementia persons, like contractures and swallowing problems. Also, they may have muscle atrophy and general deterioration. They usually need more passive physiotherapy.
Persons with dementia are often unable to tell us about their problems like pain or indigestion and so on. We have to be more observant and careful as caregivers.
DCN: You mentioned earlier families can use their day’s routine to identify what to learn for caregiving. Typical skills are obvious, and relate to basic care—bathing, shampooing, cleaning, feeding, position change, transferring them from bed to a chair and back, and so on. But we may miss some other important aspects because they are not part of such essential care work.
For example, consider skin-related problems. Older persons have very delicate skins, and keep getting bruises. How do we handle this?
Dr. Hegde: As people age, their skin becomes very fragile. Their capillary walls are more fragile and they are more susceptible to breakage. The protective layer of fat beneath the skin has also reduced so people get injured easily. You see the bruises all the time. You worry, I bruised them, did I hold so tight? But actually, you haven’t held them tight—they just bruise easily. You can try and apply less pressure while holding them but they may still bruise.
An ice pack can help the bruise resolve faster, but healing will still take time. Four to five days is reasonable in an old person. The bruise will move through stages, starting with a pinkish red, then becoming darker, blue-black sort. It keeps changing till finally it is a faint yellow colour. Families get worried they did something wrong when they see a dark blue bruise but what they are seeing is not the first stage of the bruise—the injury has happened earlier. Give the bruise time to heal.
DCN: When is a bruise cause for worry?
Dr. Hegde: If the bruise is on loose skin, loose flesh, I would not get worried.
Usually it is not the bruise that is a cause for worry, but a muscle or bone injury under the bruise. There could be a fracture. Or something that needs anti-inflammatory medication. Look for the presence of significant pain.
Usually it is not the bruise that is a cause for worry, but a muscle or bone injury under the bruise. There could be a fracture. Or something that needs anti-inflammatory medication. Look for the presence of significant pain. If I touch a bruise and the person screams, it means there is significant pain. The bruise is tender. There could be swelling.
In such cases, there may be pain when you touch anywhere on the limb, not just on the bruise. A bruise at the knee may be seen when the caregiver tried to separate the knees to change a diaper, but maybe the femur was fractured, and when you touch anywhere on the leg it hurts. Many late-stage persons have significant osteoporosis. Even a slight amount of pressure can cause a fracture.
In case of pain and tenderness, get a doctor to check what is wrong. Even if nothing is broken, the person may need an anti-inflammatory medicine for a few days. If you can’t get a doctor, ask a nurse for an initial assessment. Or can go to a doctor with a photograph of the bruise, maybe with an x-ray done using a portable x-ray service. Or take a video of what happens when you touch or move the person. The doctor will advise.
DCN: How can we keep their skin healthy?
Dr. Hegde: One is maintaining circulation. Second is, don’t use very hot water—use only lukewarm water. Hot water may do more harm to the skin, while lukewarm water retains the skin’s moisture and prevents the skin from drying. Try to keep the skin soft and moist. If it’s dry, it gets cuts.
Don’t wipe off all the moisture after a bath. Just dab and dry. You can use flannel or a folded thin towel to dab the skin. Apply moisturising lotion after the bath when the skin is still slightly moist. Avoid talcum powder; it dries the skin.
DCN: Sometimes people get scratches because of their nails, or seem to have an itch they keep scratching.
Dr. Hegde: Try to prevent scratching by cutting and filing the nails, so that the nails don’t have sharp edges. Or soak the nails in warm water and file them frequently. Nail care and foot care twice a week also helps.
You also need to prevent scratches getting infected. Apply some mild antiseptic cream if needed. If the person keeps scratching the same place again and again, you can bandage it. That will let that place heal, though they may scratch somewhere else. If scratching persists, consider using a sock to cover their fingers. I find that when this is done for some time, the scratching behaviour is forgotten.
A lot of such behaviours are habitual. They do something, they get some sensation they enjoy, and so they keep doing it. If you manage to make them stop for some time, you can break the behaviour pattern.
A lot of such behaviours are habitual. They do something, they get some sensation they enjoy, and so they keep doing it. If you manage to make them stop for some time, you can break the behaviour pattern. Think of ways to distract the person so they don’t scratch. Maybe they are scratching because of they have a really dry skin, and it itches. Use skin care techniques to improve the dry skin. Ask a dermatologist about special products that can help.
An allergy is another possible reason. Some soaps and shampoos are very harsh; look for milder products like hypoallergic products. They’re expensive but they may help you get past that stage when the skin is really dry.
You may need to supplement various skin tips with an anti-allergy tablet for a few days. Once the scratching habit subsides, you may be able to stop the tablets and just continue with the dry skin tips.
Some foods may also cause allergy. In these cases its best to consult someone who treats allergies or even consider alternate treatment options like Ayurveda.
See what helps in your case.
DCN: We often hear that doing massage and passive exercise are an important part of caregiving. Could you explain why these are considered important, and how we can do them?
Dr. Hegde: A massage relaxes the person considerably. It improves blood circulation. It is also a form of tactile stimulation, and adds to the quality of life of the person.
Massage has to be done carefully. Don’t massage too hard; don’t think, I’ll give a proper massage and the person will feel better. Don’t yank or pull. There is a pressure level that is appropriate and a pressure level that can harm.
Massage has to be done carefully. Don’t massage too hard; don’t think, I’ll give a proper massage and the person will feel better. Don’t yank or pull. There is a pressure level that is appropriate and a pressure level that can harm. Ask a physiotherapist to show you the correct amount of pressure, and what can be safely done. Or get a vibrating massager so that you control the pressure you’re applying. Use a bit of oil and let the machine do the work.
You can massage all over the body. Focus on the back if the person spends long periods in bed or sitting.
Passive exercise is also very important. We use passive exercise to try to retain the person’s range of motion as much as we can. A physiotherapist can show you what to do.
If possible, do massage and passive exercise daily, maybe even twice a day. Don’t be rough, don’t apply too much force, and watch out for pain. If you have any doubt, opt for milder pressure. Also, if contractures have already set in, you have to be very careful.
DCN: What are contractures?
Dr. Hegde: A contracture can be described as a stiffness of a joint, a stiffness that maintains the joint at a particular angle, such that the joint is difficult to bend or extend beyond that. The person holds the joint in that position. For example, a wrist flexion, where the hand gets bent at an angle and does not straighten out. If you try to straighten it out the person winces and you realize you are doing something wrong.
In a lot of late-stage persons, you see wrist flexion. Another common contracture is the ankle extension, where the ankle is outward and extended. Yet another common contracture is when legs remain bent at the knee and don’t straighten out.
DCN: Sometimes a family caregiver is handling all this work alone. What level of massage and passive exercise should she aim for if her time and energy are less?
Dr. Hegde: That’s difficult to say. Keep in mind the purpose of these, and why they are important. Try for two sessions each day, or one, or maybe combine the massage and passive exercise sessions or do them on alternate days. You will have to see what you can handle.
DCN: lease tell us about what bedsores are and how to reduce the chances of bedsores.
Dr. Hegde: A bedsore is basically the breakdown of the skin. This could happen because of lack of moisture or lack of circulation to that area.
Bedsores are more likely in some parts of the body, which we call “pressure areas.” Like areas where bones are prominent and close to the surface, or other body parts that are under continual pressure because something keeps pressing on them.
Try to make sure no part of the body is in contact with a hard surface for very long, and that there is no breakage in the area. Watch out for a slight redness in an area of the skin, which is how a bedsore begins. You get a variety of inflatable rings for lifting off one part of the body from the bed. You can also use other objects, like a glove with water, or some type of air bubble, or a water bottle, whatever can reduce the contact between that part of the body with the bed or chair. And keep changing the position of the water bottle or whatever you are using.
Make sure the bed-ridden person changes sides every two or three hours. Some persons turn themselves. But others cannot turn or don’t want to turn, so you have to turn them every two to three hours, even at night.
Make sure the bed-ridden person changes sides every two or three hours. Some persons turn themselves. But others cannot turn or don’t want to turn, so you have to turn them every two to three hours, even at night. Consider an air mattress for persons who no longer turn on their own. Ask a physiotherapist to check the current state of the person, and advise you on bedsore prevention.
The lower back area is most prone to bedsores. One tip is that each time you change the diaper, before you turn the person on the back, massage the lower back lightly for circulation. One problem is that sores start forming in the lower back or buttock area, and when people pass motions, it touches these sores. This is especially seen for persons who keep passing small amounts of motion all day. Try to use padding to avoid this problem.
DCN: How are bedsores treated?
Dr. Hegde: The faster you notice sores, the faster you can to do something about them.
The first stage is slight redness, and you need to notice it right away to stop it from getting worse. Reduce contact and pressure on that area. Keep checking the status and get an opinion of a nurse or doctor. Most nurses are trained in bedsore dressings and know what dressing is required. The conventional method is using sprays, betadine dressing, etc.
If the bedsore progresses and bursts and there is a yellowish pus discharge, it means it’s got infected. Then, in addition to a dressing, it may require an antibiotic for the infection.
Bedsore healing is not just bedsore dressing, it includes things that can promote healing.
If the bedsore does not heal for some time with all this, consult wound specialists. They will assess the bedsore and the person, and give you special dressings to use. They also advise on other actions possible to speed up healing. For example, they may suggest improving hydration– maybe the person needs to be on IV fluids for some time. Or they may suggest vitamin injections, or more intake of some types of food. Bedsore healing is not just bedsore dressing, it includes things that can promote healing.
DCN: Thank you, Dr. Soumya Hegde, for this discussion on skin care, massage, contractures, bedsores, etc.
We will continue discussing special care topics in Part 4, and look at constipation, use of catheters, hygiene, dental care, reducing restlessness, and improving the person’s quality of life.
Previous: Home care for late stage dementia, Part 2: Getting medical advice and preparing for declineNext: Home care for late stage dementia, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life
Note: In this interview series, Dr. Hegde shares information and her suggestions on several topics of late-stage dementia care, for the general convenience of family caregivers. Each family’s care situation is different, and readers will need to see what is helpful for them, and also look at information from other sources. For medical advice for your situation, consult your doctor.