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]
We continue in this part with more special care topics, and discuss constipation, use of catheters, dental care, and improving the person’s quality of life.
Questions/ Comments by Dementia Care Notes: Another issue that may not get noticed is constipation. Someone with dementia may not tell us she is constipated. How do we detect it, and what can we do about it?
Dr. Soumya Hegde (Consultant Geriatric Psychiatrist): Most people have their own frequency of bowel movements. Keep track of the person’s bowel movements to know if they are delayed from their normal cycle. See whether they have been drinking the same amount of fluid, having the same amount of food. Simple remedies may work if done as soon as there is a delay in bowel movements—like giving them warm water (if they can drink safely), increasing the fluid intake slightly, and so on.
Check for bloating—see if there is hardness near and below the belly button. They might pass a lot of gas, but not be able to open their bowels.
Check for bloating—see if there is hardness near and below the belly button. They might pass a lot of gas, but not be able to open their bowels. You can do a PR (per rectum); this is an examination through the rectum, a procedure a nurse can train you on. This will let you check if they have hard stools that they have not been able to evacuate.
Their appetite may come down. They may find no taste in the food. This is a cycle—if they don’t eat enough, there is constipation, and if there is constipation, they don’t want to eat. Act before you get caught in this loop.
An enema can help. A phosphate enema is usually safe, but ask your doctor to prescribe what is suitable. Also ask about mild laxatives you can use.
Families handle constipation differently. Some like to give medicines and wait, and repeat the medicine if there is no motion. The problem is that in the case of medicines, it is difficult to say when the motion will happen, so sometimes you give the medicine, there is no motion, and you give it again, and now the person has a lot of motion because you gave two doses instead of one. An enema is simpler that way because it is immediate. Your choice depends on what you and your doctor are comfortable with.
It is good to have a pattern so that things do not reach a crisis state. For some persons it may be enough to keep a watch and to act in the early stages of constipation. But some persons are habitually constipated.
It is good to have a pattern so that things do not reach a crisis state. For some persons it may be enough to keep a watch and to act in the early stages of constipation. But some persons are habitually constipated. For such persons, you may need a timetable to ensure you keep giving enough laxatives or enemas as suitable, and in time. Families often establish their own pattern of dosages and days.
In fact, a lot of caregiving is about understanding patterns and setting routines for what to do for everything (not just constipation). It reduces the chances of problems and makes care easier.
DCN: We’ve heard of some cases where the family was advised to use a urinary catheter to save diaper costs. But a catheter use has its own problems and is recommended only for some specific cases, not as a cost-saving method. Could you explain what a catheter is, and tell us what we should know about using one?
Dr. Hegde: A urinary catheter is a tube inserted into the bladder via the urethra—it allows the urine to drain out into an attached urine bag. The catheter has to be inserted by a trained nurse, and to be replaced at a frequency the doctor advises.
A catheter can cause problems. It is a foreign object introduced into the body and can be a source of infection. People on a catheter have a higher chance of urinary tract infection (UTI) because of this.
A catheter can cause problems. It is a foreign object introduced into the body and can be a source of infection. People on a catheter have a higher chance of urinary tract infection (UTI) because of this. Using catheters properly needs alertness and care. A catheter can hinder a person who is still walking around. When the person sits or lies down, the urine bag should be at a lower level so that the urine does not flow back. The person may also keep pulling on the catheter.
A diaper is practically safe in all these respects. But it is costly.
A catheter may be required in some situations. Catheters are required when there is retention of urine because the person is not able to pass urine. There could be a problem with the passage itself. This is more common in men because of enlarged prostates.
There are other situations, too, when a catheter is considered. Suppose a person has a bedsore in the diaper area and this keeps getting wet and does not heal. If you use a catheter you can keep the area exposed and dry so that bedsores heal faster. You can turn the person on one side, and let that bedsore area get air and heal. The catheter can be removed once the sore has healed.
I also use catheterization for a few days in case I need to monitor the output, like when the person is on IV fluids and I want to know the amount of urine—a catheter and urine bag lets me measure it correctly.
…a catheter is not a convenient and cheap substitute for a diaper. It should be used only when appropriate.
But a catheter is not a convenient and cheap substitute for a diaper. It should be used only when appropriate.
DCN: One problem some families report is that the room with the person always smells of “illness.”
Dr. Hegde: That is usually because of the clothes and the stench of urine. Sometimes caregivers tell us that whatever they do, the person’s skin smells of urine. But why is the urine smelling so strong? Maybe the person is dehydrated or has a urinary tract infection. Solve that problem.
Poorly secured diaper disposal bags can be another problem. If you’ve securely tied the soiled diaper into a disposal bag and put that inside another big bin, there will be no smell.
…find the source and reason of the smell. Maybe you should hydrate the person more, change the diapers more often.
Some people try to handle this problem by spraying room fresheners. But instead of that, find the source and reason of the smell. Maybe you should hydrate the person more, change the diapers more often. Check the clothes, keep the area open. Ensure ventilation.
DCN: Another challenge families report is problems of getting the person’s teeth cleaned. Other dental problems faced include plaque, cavities, loose teeth, and ill-fitting dentures/ lost dentures. How can these be handled at home for someone with advanced dementia?
Dr. Hegde: Maintaining dental hygiene is very important. If the person can no longer spit when you try to brush their teeth, try using diluted mouthwash to clean the teeth. Dip a cloth in it and wipe everything very well. Be careful; don’t pour it into their mouth!
Every few days, maybe once a week, try to do better cleaning. Wait for a time when the person is cooperative and use the help of other family members to do this.
Some agencies provide home nurses for the oral care procedure. They come with the equipment they need and do it. You can use this service periodically.
Another way is to take them to a dentist once every three months or so for a proper cleaning. Talk to your doctor about what to use for sedation if required to help the patient cooperate for the procedure. Arranging such a trip is difficult but possible.
A loose tooth is very risky, particularly if the person swallows it.
If the person has a cavity (caries) or a loose tooth, you may need to take the person to a hospital. They will admit the person, use general or local anaesthesia, do the procedure, and send them back. Try to get as much dental work done in one trip as you can. A loose tooth is very risky, particularly if the person swallows it.
DCN: What about dentures?
Dr. Hegde: There are many problems in using dentures. They can be ill-fitting and cause mouth ulcers. Some persons refuse to take the denture out and clean it.
Also, a denture fitting requires the cooperation and understanding of the person; this is a problem for someone with dementia. And gums may recede so much that dentures don’t stay in place.
Before wondering how to get a proper denture made, think, does the person really need a denture?
Before wondering how to get a proper denture made, think, does the person really need a denture? I wouldn’t suggest a denture for late-stage dementia. In any case in the late stage, when persons are on semi-solid food, dentures are not needed.
DCN: Another problem some caregivers report is that sometimes the person sleeps all day and is restless and awake at night and may even keep groaning. This is worrying and disturbing for family members.
Dr. Hegde: Try to keep the person awake during most of the day. Night time can be frightening for the person. Lights are out, there is no activity, no noise. Everything is hush hush. They are scared; they do not feel secure enough. If they are kept alert and engaged during the day, the body gets tired and they sleep off at night.
DCN: Overall, what can we do to improve the quality of life of a bed-ridden late-stage dementia person?
Dr. Hegde: A lot depends on what is still possible for them.
Think of the types of stimulation possible a bedridden person—more of the tactile, auditory, olfactory things and maybe not so much of cognitive stimulation, puzzles and all.
For sound, for example, maybe have a tape recorder to play their favourite music. If they are not into music, then maybe play a recorded conversation between you and them. Or put wind chimes.
Tactile stimulation, like a head massage or a body massage, can be very relaxing for the person.
If they are still opening their eyes and looking around, maybe put a clock on the wall. And pictures. Look for what is practical for you. You can add a fragrance, if that seems to make a difference.
Try to keep the person engaged through the day. If possible, transfer them to a wheelchair from the bed and take them around. That transferring may be difficult at home. But at least try to keep them sitting up for some time unless there is a medical problem in keeping them upright.
Try to keep the person engaged through the day. If possible, transfer them to a wheelchair from the bed and take them around. That transferring may be difficult at home. But at least try to keep them sitting up for some time unless there is a medical problem in keeping them upright. Keep them propped up for most of the morning, and then let them lie down in the afternoon, and again prop them up in the evening. This way you can connect with them more, you can go in their room and talk to them. They can see what is happening around them.
How you set up the room can make a difference. In fact, there is an entire field of study called nidotherapy about how changes in the environment can bring about changes in the person.
DCN: Thank you, Dr. Soumya Hegde, for this discussion on constipation, use of catheters, dental care, and improving the person’s quality of life, etc.
For the final two parts, we will look at aspects related to a major problem most families face: when the person with dementia does not eat enough food and has swallowing problems.Previous: Home care for late stage dementia, Part 3: Bruising, skin care, exercise, massage, bedsores
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.