What caregivers can do: Set up the home for late-stage dementia care. Learn home nursing and other necessary skills. Use support systems. Stay in touch with doctors. Coordinate with the family for major decisions.
Almost all late-stage care in India is done at home by the family. This final stage may be short or may go on for years; the person keeps getting worse and will finally die. Caregiving for persons at this stage of dementia is very different from caring for early or mid stage dementia persons.
- Set up the home for care.
- Set up support systems.
- Learn home nursing.
- Understand the person with dementia.
- Remain alert on problems related to long stay in bed.
- Remain alert on other medical problems of the person.
- Learn about end-of-life care decisions and consult with family.
- Stay connected with the person.
- Handle grief.
- Home nursing topic list.
- See also….
You need to make many changes at home to care for a bedridden person. Because the bed-ridden phase could last for months and even years, look at changes that make home nursing easier, otherwise you may injure yourself or the person.
Think about hiring or buying a hospital bed. Look for a hospital bed where the height is convenient for you after the mattresses is placed on it. It should be simple to raise the person to sitting position and then return the person back to lying position. Even simple and relatively cheap hospital beds have a lever for this; make sure you can use it conveniently. A reasonable hospital bed can save physical effort and reduce risk of injury.
Bed-ridden persons tend to get pressure sores. These are also called bed sores, pressure ulcers, and decubiti. Use mattresses that allow the pressure points to keep shifting and reduce the chances of pressure sores. The most common mattress used is an “air mattress” (also called alternating column air bed) but there are other options also, like water beds. Consult doctors for what is suitable, and also think of the effort you will need to move or fill it, etc. Talk to families that have handled a bed-ridden person at home.
Wheelchairs, walkers, and walking sticks are sometimes useful for the time when the person with dementia is having problems but is not fully bedridden. Ask your doctor for advice.
When trying to think of ways to improve the home for the person with dementia and for making it easier to care, consider assistive devices. Assistive devices can make a lot of difference to the well-being of the person, as well as to the effort that the caregiver needs to put into care. A proper bed or wheelchair, a suitable bed rest or a folding bed tray or a shampoo basin can make care of someone with reduced mobility much easier and gentler.
Support systems are a must for home nursing of someone in late-stage dementia. Find services that can help you with activities like:
- Blood and urine tests, with sample pickup from home
- Portable ECG
- Nursing assistance for wound inspection and care, dressing, bed sore dressing, and diabetic foot care
- Nursing assistance for IV/ injections, nebulization, enema, catheterization, bladder wash
- Home visits by physiotherapists
- Home visits by doctors
Also think of how you will handle emergencies when they have to be taken to a hospital. Keep the phone numbers of ambulance services easily available. Be ready for rushing to a hospital at very short notice. For example, keep a bag ready with medical papers, insurance papers, medicine lists (maybe strips also, to show doctors what the person with dementia was taking and to make sure there is no gap in medication). And have a list (email ids, phone numbers, etc.) of who you may need to inform about the hospitalization–not just relatives or persons who may help, but also persons at your workplace and your clients who have to be told that you are busy and may not be available for some days.
Care for a bed-ridden person requires doing many things while the person is on the bed. In this state, persons with dementia are almost fully dependent and often unable to clearly explain their needs. They may not even understand the caregiver or cooperate. Caregivers have to keep the person clean and well-fed, and maintain their health and well-being. For this they need to learn several skills like bathing someone in bed, exercising them even if they don’t cooperate, feeding them, cleaning them, and so on.
This set of skills, often called home-nursing skills, need to be learned. For this, families need to talk to their doctor, nurse, physiotherapist, etc., and also look at training material and videos, and watch demonstrations by nurses/ doctors and in videos. They need to be able to do all these actions properly or to be able to supervise any home attendant they employ for this work.
A section below puts together several important skills to learn. While the list is not comprehensive, it provides a starting point. Talk to your doctor to ensure you know what skills you will need, and what material you will need for care.
In late-stage dementia, persons often communicate less. Many stop talking. You have to guess what they need based on the way they move their body and on what you know about their habits, likes, and dislikes. Is the person hungry now, or should you give food later? Is the person frowning at the soup or spitting it out because the soup has carrots, or the salt is less, or is the soup is too spicy? When sitting next to the person, which topics should you chat about? What would the person like to hear? Which photo album will cheer the person? Is the person bored? Because all such care depends on understanding the person, it is better if the same family members and trained attendants continue to give care through this stage.
Some families share the care work by moving the person with dementia from one home to another every few months. This may not be possible or comfortable for someone in late stage dementia. Think about this aspect when planning care.
Persons with dementia may not tell when they are unwell or in pain. Regular home checkups by a doctor can help find a problem early.
One very common problem in bed-ridden persons is bedsores (also called, pressure ulcers and decubiti). You have to take steps to prevent bedsores. One thing is to get a suitable mattress (discussed above). You will also need to turn the person every few hours. Keep sheets free of wrinkles, and don’t let the skin deteriorate. Ask the doctor how to do suitable skin care. Also, examine the person’s skin carefully every day to detect bedsores early. If bedsores occur, consult doctors who will tell you about any cleaning or dressings.
Other common problems are infections, sprains, loose motions, and constipation. They may scratch themselves and hurt themselves. Because they sometimes stay in the same position for a long time, their muscles get stiff and may become rigid. You may not be able to make them straighten a leg or arm, or open the hand, etc. This is sometimes referred to as contractures. Remain alert about such problems so that you can act in time. Also talk to the doctor to get a better idea of what to be careful about.
Keeping the teeth and mouth clean is particularly important. This is also called oral hygiene or mouth care. Often, because of faulty swallowing, food and liquid enters the lungs of the person. This is called aspiration. So an infection from the mouth can spread to the lungs if proper oral hygiene is not maintained. Aspiration pneumonia may happen. This is an inflammation of the lungs and airways because of breathing in foreign material. This is very common among persons in late stage dementia, and a frequent cause of death.
The person already has problems because of dementia. There may also be other medical conditions. And new medical problems may happen because of age and other risk factors.
Unfortunately, dementia is a “life-limiting” condition. That is, having dementia hastens death because it causes damage and because the persons may not notice or tell you about their health problems. This means they do not get treatment in time and so they get worse and may die.
Try to get a good doctor who understands the person’s condition and does regular home checkups. The doctor may suggest regular checks based on existing medical problems, age, and other risk factors. Examples of monitoring could include blood pressure, blood sugar, hemoglobin, liver and kidney functions, thyroid, vitamin B12, etc. Eye checkups (such as tests for glaucoma) may be needed depending on the “patient history”. Make a schedule for what you need to do and when with the help of the doctor.
Be alert about new medical problems. Use the facial expressions and body language of the person to know if the person is in pain or having some other problem. Persons with dementia do not tell when they are in pain, or they may give a wrong location of their pain. They don’t even know when they have fever. Watch out for signs like the person seeming very disinterested or lazy, unwilling to move, refusing to do something, frowning, etc.
Typically we go to a clinic or hospital for medical attention. Such visits are very difficult for someone in advanced dementia. Every trip outside the home is a major activity to arrange. You may need to arrange an ambulance and stretcher and also have others who will help you with the transporting. Such visits are also very difficult for persons with dementia. They may be frightened because they may not understand why they are being “tortured” and removed from home. You need to decide whether a checkup is worth a trip outside home. A doctor who knows the person can help you decide whether to take the confused and frail person for an external checkup.
Making decisions about care for someone with dementia is different from making decisions for other persons with severe health problems. This is because in late-stage dementia, persons are usually very confused and alarmed when they see doctors or nurses.Aggressive treatments may frighten them because they don’t know they need treatment. A feeding tube sticking from the nose may bother them because they don’t know what it is and why it is needed. Research studies are available on the effectiveness of some treatments for dementia patients as compared to other patients.
Some of the areas to decide are
- Should the person be given aggressive treatment like antibiotics or even surgery, or should you choose less aggressive methods and focus on comfort of the person
- Whether to use tube feeding if the person reduces or stops eating. Even for tube feeding, there are options between nasal tube and having a PEG (a minor surgical procedure) and this also needs to be decided on if tube feeding is required.
- Whether to hospitalize the person for severe conditions or continue to treat at home
Often families assume that aggressive treatments and hospitalization are necessary. They feel that not getting such treatment is like killing the person. But studies show that such treatments do not increase the life of someone with dementia. They don’t even improve the quality of life. To decide whether or not to use such treatments, you and your family need to get data and discuss the pros and cons.
Different family members may have different ideas on what is best. Some may want to try a treatment because they feel not doing so would be neglecting their duty. They also expect others to blame them if they don’t make every effort. They may not stop to think whether the person will benefit from aggressive treatment. When a doctor says the patient needs to be taken to a hospital, they don’t ask about the advantages and disadvantages. The decision to stop treatment becomes difficult once someone is admitted to a hospital. In the hospital, the doctors and nurses often talk as though stopping the treatment and taking the patient home is the same as killing the patient. No one openly discusses the disadvantages of a hospital stay for dementia.
To handle such decisions, learn about “palliative care.” Wikipedia explains it as: an area of healthcare that focuses on relieving and preventing the suffering of patients. Palliative care combines many medical areas. (It is a multidisciplinary field). It aims to support the quality of life of all patients. This is a relatively new field, and typically used for cancer and HIV patients. You can talk to palliative care experts to understand how to keep a late-stage dementia person comfortable and pain-free. A palliative care specialist who understands dementia can help you consider various options so that you and your family can take decisions everyone feels comfortable with. You may want to give aggressive treatments, or maybe you decide not to. Whatever you choose, your decision can be based on data and discussion. Then you will not have regrets later.
Note: Many countries have laws on how doctors are supposed to follow directives such as “do not resuscitate.” India has no such law. Doctors in India also differ in what they think makes them liable for malpractice or neglect cases. Currently, laws regarding advances directives and living wills are still being discussed. Doctors may be uninformed about the latest status. Hospitals find it safer to insist on aggressive treatment. Some may ask for a court order before they agree to a family’s request to withdraw life support or discharge a patient. Families are unclear about what is legal and ethical. Try to get clarity from legal experts and palliative care experts on current laws regarding withdrawal of feeding. Ask what doctors are legally required to do to sustain life. Because different hospitals choose different interpretations of the law, use hospitals that match your view of what can be done. The legal situation regarding this keeps changing, so please check for yourself.
One aspect of care is to stay emotionally connected with persons with dementia during this last phase of life, and make their life easier and more comfortable.
In late stage dementia, persons s are usually passive and may barely talk. You may find it easier to feel concern and love again. You will probably not be tense about things that were major problems earlier, such as aggression, wandering, etc. But you are also seeing the person declining and dying. This is very difficult emotionally very difficult for most caregivers. Some family members may be so uncomfortable that they cannot even enter the room.
You can have an affectionate and fulfilling relationship even with an apparently uncommunicative bedridden person. They may not talk much, but they sense affection. They may smile or respond if you touch them or squeeze their hands. You, too, can find it relaxing to spend time with the person without doing or expecting anything.
Late-stage dementia persons may still enjoy many things. They may like to listen to music or see family albums. They may enjoy family members gently talking to them about pleasant incidents of the past or telling them what they did during the day. They may enjoy stories, like mythology stories. They may find your talking to be soothing companionship even if they don’t understand. Or they may like your silent, relaxed presence. You can also make the room pleasant by putting up large pictures of family members, scenes from mythology, or comforting pictures of gods. Some like incense.
When the person is in late-stage dementia, it is obvious that this is the final stage which will end in death.
Seeing someone die is not just losing that person, it is also losing all joint memories and activities. You may have memories of the past, before the person got dementia. You also have memories of the dementia days and care, and the memories of the final decline. Often, there is a feeling of helplessness because you see the person fade and cannot stop it. Counselling can help you face your imminent loss. It may give you the strength to face the care work. You may also find it helpful to make the most of the time you still have with the person.
If you spend most of your time and energy in care, this caregiving role is probably a big part of your identity. Over the years, you may have made several adjustments to care for the person. Maybe you changed or left jobs. Or lost your old circle of friends and not been able to make new friends. Your day has been full of care-related work. The person’s death will create an emptiness in your life. You will not need to do any care work, and you no longer have friends or a job to occupy you. This results in a feeling of loss of identity, as if no one needs you now.
You need to be gentle with yourself as you adjust to the loss and also to the fact that you are no longer a carer. This often takes much longer than expected. Counselling can help to adjust to this major change and start looking at other aspects of life.
Home nursing requires both skills and equipment and a properly set up environment, and also alertness about a number of things. Below is a video to give some idea of what is involved (please ignore the first minute or so).
To understand how to provide home nursing, talk to your doctor and any home care service you have. See how nurses do the various tasks you have to do. Ask physiotherapists to show you safe ways to do these tasks. Learn the correct and safe way to ensure you are less tired and less likely to hurt yourself or the person.
Another source of information is online videos and manuals. Use these to supplement what you learn, but make sure that the techniques you finally use are medically safe and appropriate by checking with your doctor/ nurse, etc. Most available videos and material for nursing bed-ridden persons assume that care is being given in an institution. That is, they assume that facilities and equipment are available. Also, they are usually not specifically for dementia persons. But in spite of this, they can give you a good idea of what you need to know and do. You can then apply this knowledge for your situation, and stay in touch with doctors/ nurses to make sure you have understood them correctly.
This section puts together a list of important topics you may need to learn for home nursing. Some of these are discussed above also, along with discussions on what you need to do to set up for home care, what you have to remain alert about, etc. The list below is not exhaustive, but it will give you a starting point. Please talk to your doctor to find out what to add to the list and also to get suitable information and advice.
- Basic care of a bedridden person: This has many components, such as being able to turn them, change their clothes, give them bath and shampoo in bed, move them to and from the bed, feed them in bed, etc. Beds have to be made and sheets changed while the person is still on the bed. Any lifting or turning of the person has to be done in a manner safe for you and the person. The bed has to be arranged to minimize the work in case of soiling. All these are typical home nursing skills. Any nurse should be able to demonstrate how to do this. There are also many online videos on specific parts of this. While the specific techniques depend on the type of bed, videos often give a good idea–any lessons from them can then be confirmed with a nurse/ doctor. Ask for a demonstration/ get your queries solved so that you can do the tasks yourself. The type of terms related to these actions are “making the bed/ turning the patient/ lifting and transferring the patient”, “moving a bedridden patient”, “making an occupied bed”, “lifting techniques”, “transfer methods”, “bed bath”, etc.
- Diaper change and perineal care: This is very important. Ask the doctor for any specific ideas on products and methods to use for cleaning. Resources are also available online to understand how to change the diaper of a bedridden person, and how to maintain hygiene of the private parts. Terms used include “diaper change” and “perineal care”.
- Oral hygiene: As discussed earlier on the page, oral hygiene is very important for a bedridden person. Ask your dentist/ doctor about procedures to follow/ products that are safe for someone who may not cooperate in terms of spitting out or opening the mouth etc.
- Bed sores (also called pressure sores, pressure ulcers, and decubiti): As mentioned earlier on the page, this is a major problem area. Learn about them. Take steps to prevent them, and learn how to spot them as soon as they start forming. Make sure you have support systems (home care services, doctors, etc.) to approach in case of bedsores.
- Nutrition, hydration, exercise, and constipation: Keep a watch on the food and liquid intake to detect if the intake is low, and to find out what to change to improve things. Switch to different foods to ensure the nutrition value remains adequate. You may need to include various oral rehydration solutions (ORS) for better hydration. Doctors can advise on this. Bedridden persons need to get exercise. Often, they may not move at all, or move very little, and may not move even when asked to. A physiotherapist or doctor can tell you which exercises are required. Usually these include range-of-motion exercises. You will need to help the person do them. If the person does not do them, you need to learn how to do passive range-of-motion exercises. Here you hold the person and gently and safely move their arms and legs, etc. Do these regularly and safely so that the person’s body does not get rigid. Constipation is another problem, given that food may have less fiber and that the person is not moving. See whether to change the type of food to reduce changes of constipation. Also, under the advice of the doctor, see whether to introduce some safe mild laxative the doctor recommends. Remain alert about constipation and seek advice before it becomes severe.
- Feeding and aspiration pneumonia: This is a very common problem in late-stage dementia persons. They need to be propped up for meals. They have problems swallowing, so you must know various techniques to prompt them to swallow. Examples are stroking their throats, pretending to swallow so that they mimic you, and such things. Stay alert about the texture, taste, and temperature of the food given so that the food suits the person and the person is more likely to eat it. Chewing is a problem in most cases, so food has to be very soft or in liquid form. Often, bedridden persons cannot swallow so they end up getting food and particles/ liquids in their lungs. They also risk getting choked. Learn how to handle choking (ask the doctor or nurse or first-aid instructor for the method to use). Aspiration pneumonia is a common cause of death in dementia, and happens when material enters the lung and causes infection. Stay alert about using suitable feeding methods and learn how to detect infection. Call doctors promptly if you suspect a problem. Some end-of-life decisions, such as a feeding tube may be suggested by doctors or others; be clear on the pros and cons of such options if feeding by hand becomes increasingly difficult.
- Ongoing medical alertness: As persons with dementia may not report problems, stay alert about any pain, infection, injury, or fever the person may be having. Get regular checkups done as advised by the doctor. It is very difficult to take a bedridden person to a hospital, so catching problems before they become severe is much better. Also learn or refresh first-aid skills.
Resources/ references from Dementia Care Notes and related sites
Pages with discussions relevant to above topics
- Discussions on home adaptations and assistive devices, including ways to get them in India: Adapt the home for dementia patients.
- Palliative care: Relevant web site links. Palliative care organizations and resources in India: resources that include directories for all-India and for city-wise, check for your city using links at: specific city-wise resource pages.
We have published a six-part series of interviews with the dementia expert, Dr. Soumya Hegde, a Bangalore-based Consultant Geriatric Psychiatrist who has extensive experience in supporting people with dementia and their families through all stages. These provide useful information and several practical suggestions. Read them here:
- Home care for late stage dementia, Part 1: Prepare for home care
- Home care for late stage dementia, Part 2: Getting medical advice and preparing for decline
- Home care for late stage dementia, Part 3: Bruising, skin care, exercise, massage, bedsores
- Home care for late stage dementia, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life
- Home care for late stage dementia, Part 5: Eating/ swallowing problems
- Home care for late stage dementia, Part 6: Tube feeding and related decisions
Interviews on this site with caregivers describing late-stage dementia care challenges in India:
- A daughter describes in detail how she and her sister cared for their father as his dependence increased. Interview includes descriptions of hospital visits, dilemmas and decisions, challenges of handling nurses, work involved in home care, and tender moments shared with the father in spite of his inability to speak: Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates
- A caregiver describes in detail how her mother-in-law became bedridden, how the home was set up, what care involves, the communication, the pain involved, and moments when the patient connects emotionally with the family: When I see Ma struggle, I get very disturbed: a daughter-in-law describes the caregiving for a bedridden mother-in-law.
An India-based caregiver describes, across multiple detailed blog entries, the work and emotions involved in caring for a bedridden mother in late-stage dementia. Some entries, and a link for a video:
Caregiver resources in India and Other dementia/ caregiving resources:Many of these sites/ resources discuss end-of-life care and the choices/ decisions involved. Many also have downloadable files with information. These documents all discuss end-of-life care, palliation, etc., assuming cultural and support settings of other countries (not India/ developing countries), so some of the discussions, such as on advance directives and nursing home care will not be relevant, but the descriptions of the possible problems and issues around them, and the criteria and approaches to offer palliation are still very useful.
External links useful for late-stage dementia
Home nursing related links:
- How to Do Home-Nursing Procedures Opens in new window
- How to Care for a Bedridden Patient Opens in new window
- How to Care for Elderly Bedridden Patients Opens in new window
- Making the bed/ turning the patient/ lifting and transferring the patient: How to Make a Turning Sheet for the Bedridden Opens in new window, How to Move Someone Who Is Bedridden Opens in new window, and How to Change Bedridden Alzheimer’s Patients Opens in new window, a discussion on lifting techniques Opens in new window. Video example: Making an Occupied Bed Opens in new window.
- Diaper change and perineal care: How to Change the Diaper of a Bedridden Patient Opens in new window. Video (female patient in hospital): Perineal care Opens in new window.
- Bed bath: Video (institutional setting) Giving a Patient a Bed Bath Opens in new window
- Oral hygiene: Video for cooperative and uncooperative patients, Oral Hygiene For The Bedridden Patient Opens in new window.
- Bed sores: An explanation : Pressure sores Opens in new window. Video with pictures of sores at various stages and how to prevent them: Pressure Ulcer Education Opens in new window. Discussion on alternating air-pressure mattress the advantages of having an alternating air pressure mattress Opens in new window.
- Swallowing problems: Some forum discussions for swallowing-related situations: FAQ15 – swallowing difficulties Opens in new window and FAQ26 – late stage dementia care Opens in new window.
- Aspiration pneumonia : Explanation: Wikipedia page Opens in new window, NIH pages Opens in new window and Medscape page Opens in new window.
Links related to end-of-life decisions, palliative care, bereavement, etc.
- The sort of problems that lead to death in dementia patients: a discussion at Alzheimer’s Reading Room on how Alzheimer’s patients die [dcnsupportext].
- The Dementia at the End of Life Opens in new window page gives an overview of end-of-life, and has links to detailed pages. While some discussion may not apply to India, there is plenty of information relevant even in the Indian context.
- The Late Stage care Opens in new window section here discusses topics like what to expect, late-stage care options, foods and fluids, bowel and bladder function, skin and body health, infections and pneumonia, and pain.
- The Late Stage and End-of-life Care Opens in new window page discuses several aspects of late stage care, including common symptoms in end-of-life care, how to provide care and emotional support, palliative care, grieving, etc.
- The End of life care Opens in new window section on the site of Alzheimer’s Society, UK, discusses the terminal stages of dementia, the sort of problems that occur, and various aspects to consider while getting ready for this stage.
- The Guidelines for a Palliative Approach in Residential Aged Care (PDF file) Opens in new window is a somewhat dated but possibly still useful document from Australia discussing severe and end-stage dementia and related care and palliation. It may help understand the sort of problems possible at this stage and how to offer palliation and support
- Discussions around tube feeding (and the related concept of “at risk feeding”, “comfort feeding”, “risk feeding” can be seen at these links: End-of-Life Nutrition: Is Tube Feeding the Solution? Opens in new window, Dysphagia Management for Older People Towards the End of Life Opens in new window, and Risk Feeding Opens in new window.
- Links for grief, bereavement and recovery (not India-specific, but may be helpful): 7 Warning Signs You Have Alzheimer’s Spouse Grief Opens in new window, Rebuilding Your Life After the Death of Your Care Receiver Opens in new window
Some books have plenty of tips and illustrations to help caregivers handle late stage patients. Check out the suggestions below, or surf Amazon.com Opens in new window or Amazon.in Opens in new window for your specific needs.
American Medical Association Guide to Home Caregiving: The title says it all–a good starting point to get the basic understanding of what is involved in caregiving for elderly persons. Includes topics like adapting homes for patients and preventing falls. Discusses caregiving skills like bed making for patients, preventing/ handling wounds and bed sores, moving immobile persons on bed and transferring them, etc. Has a chapter specifically for persons who have Alzheimer’s Disease. For the paperback version, see Amazon.comOpens in new window, or, if you are in India, see Amazon.inOpens in new window or FlipkartOpens in new window or any other vendor.
The Comfort of Home: A Complete Guide for Caregivers (Maria M Myers, Paula Derr): A practical guide for caregiving, well-written and worth having a look at. Discusses how to prepare for caregiving. Describes how to support persons who need help, including bedridden persons. Includes section on range of motion exercise, and on positioning, moving, and transferring persons to and from bed, with plenty of illustrations. Discusses various types of problems and possible approaches. Though not specifically for dementia care, it has a lot of very useful information for home caregivers, caregiving, including late-stage care. For the paperback version, see Amazon.comOpens in new window, or, if you are in India, see Amazon.inOpens in new window or FlipkartOpens in new window or any other vendor.
(You can also see our list of suggested books at: Books on dementia and care
Additional links/ books: One particularly relevant book here is Caring for a Loved One with Advanced Dementia Opens in new window, available at this link Opens in new window. This discusses various end-of-life issues, and shares data on how these apply for dementia patients (which is somewhat different from the way they apply to people suffering from other terminal conditions). Unfortunately, the delivery currently is only in the USA.
Page/ post last updated on: January 1, 2019