Late-stage dementia care

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The person with dementia becomes fully dependent for all activities. The person may be bedridden, and may even stop talking.

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.

Many late-stage topics are also discussed in our six-part interview series with Dr. Soumya Hegde. Topics include setting up for home care, getting medical advice, special care topics relevant for bedridden care, and one of the most worrying aspects: eating and swallowing problems, and decisions around tube-feeding. See the interview list here.

Sections on this page:

Getting home health care and handling emergencies and end-of-life have become more challenging if there is a pandemic type situation with lockdowns and restrictions, or there is a high risk of serious infection for a vulnerable person with dementia. In any case, if there is risk of a serous infection, families need to consider telemedicine and review how they will ensure any home help is not an infection risk, and also feasible and safe ways to get medical assistance. Read about these aspects related to medical support at Dementia Home Care during COVID – Infection Risk, Vaccination, Care Approach.

Set up the home for care.

You need to make many changes at home to care for a bedridden person. The bed-ridden phase could last for months and even years, so look at changes that make home nursing easier, otherwise you may injure yourself or the person.

Consider hiring or buying a hospital bed. Select one where the height is convenient for you after the mattress 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, 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, and so on. 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.

Consider assistive devices. These 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 makes care of someone with reduced mobility easier and gentler.

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Set up support systems.

Support systems are a must for home nursing of someone in late-stage dementia. Find services that can help you with activities like:

various things relevant for home care and medical emergencies
  • 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.

Home health care services can provide help like physiotherapists and attendants for home, and send nurses for injections and IV etc. Often, however, it is difficult to get home visits by doctors.

Even if providers mention “home visits by doctors” as part of their services, most do not have their own doctors. They only maintain a panel of doctors. When a family asks for a doctor, they check with their enrolled doctors; if no doctor is willing to make the home visit, the service provider will just say, Sorry, no doctor is available today. This unavailability is particularly high at night, on holidays and weekends, and for remote locations. Also, home care services keep closing down/ withdrawing services. It is rare for agencies to handle emergency home visits by doctors.

No single app or agency can be depended on as a reliable source of home doctor visits. Be ready to use multiple home agencies and apps to get a doctor home. Ideally, try to have a family doctor who knows you well and feels involved and concerned enough to help. Other suggestions: find out nearby doctors who are willing to make home visits, discuss availability of doctor(s) residing in your own apartment complex, exchange data with neighbors, get doctor lists and other home care suggestions from a good clinic or hospital nearby, ask your apartment complex office to talk to neighborhood doctors and create a list of doctors willing to visit apartments in that complex.

Be ready for rushing to a hospital at very short notice. Keep the phone numbers of ambulance services easily available. Maybe keep a bag ready with medical papers, insurance papers, medicine lists (maybe medicine strips also, to show doctors the current medicines and also ensure there is no gap in medication). Have a list (email ids, phone numbers, etc.) of persons to inform about the hospitalization, such as relatives or persons who may help, but also persons at your workplace and your clients who need to be told you may not be available for some days. Carry along your own medication and some emergency food etc. so that you don’t end up becoming hypoglycemic or hypertensive during the hectic activity in the hospital.

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Consider residential care homes if home care seems infeasible.

Not all families can handle late stage care at home because of the set-up, work and responsibility involved and caregivers may be busy, frail, or lacking the skills and confidence to take on this work. Consider placing the person with dementia in a residential care home in such cases, with due evaluation of options and their affordability. Unfortunately India does not have many good and affordable care homes that can support persons with dementia, especially through late stage and end-of-life. Discussions on residential care homes and how to evaluate them is available here, and city-wise dementia resources including care homes are available here.

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Learn home-nursing.

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 explain their needs. They may not understand the caregiver or cooperate. To keep them clean and well-fed, and maintain their health and well-being, caregivers need to learn skills like bathing someone in bed, exercising them even if they don’t cooperate, feeding them, cleaning them, and so on.

Managing toilet activities (urine and bowel) and handling incontinence (urinary and bowel) is a major part of care. Initially, the person may indicate they need to “go” or caregivers may sense the needs of the person, but still there will be “accidents” and soiling (urine or fecal matter) when the person doesn’t realize or tell in time. Later, indications may be missing. Management is done using bed-sheets that have waterproof/ plastic sheets underneath, disposable underpads ( flat sheets with absorbent material on one side and plastic on the other ) on the beds, and diapers. Some disposable diapers and underpads may also convert liquids into gels and hold them below the top layer, keeping the top relatively dry. Diapers may be resisted by the person. Care includes tasks like changing diapers and underpads, cleaning the perineal area of the person, changing soiled sheets, cleaning soiled sheets, and so on,, and require a suitable care set up.

Care requires learning skills often called home-nursing skills. Families can to talk to their doctor, nurse, and physiotherapist for these, look at training material and videos, watch demonstrations by nurses/ doctors and see videos. They need to be able to do these actions properly or supervise home attendants they employ.

A section below lists several important skills to learn. While not comprehensive, it provides a starting point. Talk to doctors and nurses about what skills you will need, and the material you will need for care.

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Understand the person with dementia.

In late-stage dementia, persons often communicate less. Many stop talking. Their needs have to be guessed based on the way they move their body and 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, what should you chat about? Which photo album will cheer the person? Is the person bored? Because 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. Consider this aspect when planning care.

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Remain alert on problems related to long stay in bed.

late stage dementia patients are bedridden and fully dependent on caregivers

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 particularly common problem at this stage is bedsores (mentioned above in the context of mattress choice). Other common problems are infections, sprains, loose motions, and constipation. They may scratch themselves and hurt themselves. Staying in the same position for a long time leads to stiff and rigid muscles and you may not be able to straighten their limbs or open the hand, etc. (This is sometimes referred to as contractures).  Problems related to poor oral hygiene and mouth care are also common. Swallowing is a major problem area. Often, because of faulty swallowing, food and liquid enters the lungs of the person (aspiration) and a mouth infection can spread to the lungs. Aspiration pneumonia – an inflammation of the lungs and airways because of breathing in foreign material – may happen, and is a frequent cause of death.

Remain alert about such problems so that you can act in time. The home nursing sections on the page elaborate on what you may need to do and learn.

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Remain alert on other medical problems of the person.

Some common problems seen in late-stage dementia (not an exhaustive list) include falls, skin breakdown, contractures, aspiration, dehydration, malnourishment, constipation, urinary tract infections, other common infections, pain, vision problems, hearing problems, depression, delirium, pressure ulcers, sleep problems, etc. These, along with other health issues like loss of muscle, osteoporosis, diabetes, hypertension, heart disease, kidney problems, and cancer make the medical aspect of late-stage care very challenging.

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. So, 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. Ask the doctor to suggest what checks should be done regularly, based on existing medical problems, age, and other risk factors. Examples could include blood pressure, blood sugar, hemoglobin, liver and kidney functions, thyroid, vitamin B12, etc. Eye checkups (such as for glaucoma and cataract) may be needed. With the help of your doctor, make a schedule for what you need to do.

Be alert about new medical problems. Use the facial expressions and body language of the person to know about pain and other problems, as the person may not tell you about pain or fever or explain their problems properly. Watch out for signs like the person seeming very disinterested or lazy, unwilling to move, refusing to do something, and frowning.

Clinic and hospital visits are very difficult for someone in advanced dementia. You may need an ambulance and stretcher and require help from others. Such visits are also very difficult for persons with dementia. They may be frightened and wonder why they are being “tortured” and removed from home. You need to decide whether a checkup is worth a trip outside home. Ask your doctor to help you decide- you can consult the doctor using telemedicine if possible.

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Learn about end-of-life care decisions and consult with family.

Because of their cognitive decline, confusion and disorientation, making decisions about someone with dementia is different from making such decisions for other persons with severe health problems. Aggressive treatments may frighten persons with dementia because they don’t know they need treatment. A feeding tube sticking from the nose may bother them. 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:

  • Whether to opt for aggressive treatment like antibiotics or even surgery, or choose less aggressive methods and focus on comfort of the person.
  • Whether to use tube feeding if the person reduces or stops eating., and if so, which tube feeding option, like nasal tube and PEG (which needs a minor surgical procedure).
  • Whether to hospitalize the person for severe conditions or 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, or that they will be blamed for not doing whatever is possible. 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 between treatments options, your family needs to get data and discuss the pros and cons.

Often, when the doctor says the patient should be taken to a hospital, families rush to do so without asking doctors about the advantages and disadvantages. Once admitted in the hospital, it is more difficult to decide to stop treatment or get the person home, partly because of the rushing around as doctors and nurses focus on treatment and discussions are difficult.

“Palliative care” is an important approach to use to handle such decisions. Wikipedia explains it as: an area of healthcare that focuses on relieving and preventing the suffering of patients. It is a relatively new multidisciplinary field and aims to support the quality of life of patients. Palliative care is typically used for cancer and HIV patients, but you can get valuable input from palliative care experts who have experience in keeping a late-stage dementia person comfortable and pain-free. They can help you and your family take decisions everyone feels comfortable with, so that your decision are based on data and discussion, and you are less likely to have regrets later.

Note: Many countries have laws on how doctors are supposed to follow directives such as “do not resuscitate.” This entire area is still new in India and doctors here differ in how they approach treatment in end-of-life. Currently, there are very few laws regarding advances directives and living wills, and doctors may be uninformed about the latest status. Hospitals find it safer to insist on aggressive treatment. Families are unclear about what is legal and ethical. Get clarity from legal experts and palliative care experts on current laws regarding withdrawal of feeding. Find out what doctors are legally required to do to sustain life. Because different hospitals choose different interpretations of the law, use hospitals that match the approach you want to follow. Remember, the legal situation regarding this keeps changing, so please check for yourself.

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Stay connected with the person.

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 are usually passive and barely talk. You may not have problems like aggression, wandering, etc., but you are seeing the person declining and dying. This is very difficult emotionally, and some family members are 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. 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 talk soothing 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. You, too, can find it relaxing to spend time with the person without doing or expecting anything.

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Handle grief.

caregivers need support when grieving

When the person is in late-stage dementia, it is obvious that this final stage 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 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 for this. Maybe you changed or left jobs. Or lost your old circle of friends and were unable to make new friends. Your day is full of care-related work. The person’s death will create an emptiness in your life. 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 of the person and to the fact that you are no longer a carer. This often takes much longer than expected. Counselling can help you adjust to this major change and help you start looking at other aspects of life.

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Home nursing topic list.

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).

If the video link above does not show, you can view the video “Home Care of Bedridden patient” on Youtube Opens in new window. Though this is not for a dementia person, it is a very instructive video and explains care in a typical Indian home setting. Ignore the blank part of the video (for the first minute or so).

For home nursing, talk to your doctor and any home care service you have. See how nurses do the various required tasks. Ask physiotherapists to show you safe ways to do these tasks. Learn the correct and safe way to care to ensure you are less tired and less likely to hurt yourself or the person.

Reliable online videos can help. Use these to supplement what you learn, but check with your doctor or nurse to ensure that you are using techniques that are medically safe and appropriate. Most available videos and material for nursing bed-ridden persons assume that care is being given in an institution, where facilities and equipment are available. Also, they are usually not specifically for dementia persons. But they can still give a good idea of what you need to know.

This section has list of important home nursing topics. Some of these are discussed above also. The list below is not exhaustive, but it will give you a starting point. Your doctor may help you add to the list.

  • Basic care of a bedridden person: This includes tasks like 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. 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. Any nurse can demonstrate these typical home nursing skills. There are also many online videos on each aspect. While specific techniques depend on the type of bed, videos often give a good idea. Some terms to surf for 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 specific ideas on products and methods to use for cleaning. Online resources are also available to understand diaper change for a bedridden person, maintaining hygiene of the private parts. etc. Terms used include “diaper change” and “perineal care”.
  • Oral hygiene: 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. Take steps to prevent them, and learn how to spot them as soon as they start forming. Apart from having a suitable mattress, turn the person every few hours. Keep sheets free of wrinkles, and don’t let the skin deteriorate. Ask the doctor about skin care. Examine the person’s skin carefully every day to detect bedsores early. If bedsores occur, consult doctors about cleaning or dressings. Ensure you have support systems (home care services, doctors, etc.) to approach in case of bedsores.
  • Nutrition, hydration, exercise, and constipation: Stay alert about food and liquid intake. If intake is low, find out what to change to improve things. Switch to different foods to ensure adequate nutrition. Or consider oral rehydration solutions (ORS) for better hydration. Ask your doctor. Also, a physiotherapist or doctor can tell you which exercises are required for bedridden persons. Usually these include range-of-motion exercises and you have to help the person do them. If the person does not do them, learn passive range-of-motion exercises, where 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 possible as their food may have less fiber and the person is not moving. Consider whether to change the food to reduce chances of constipation. Ask the doctor if you need to introduce some safe mild laxative. Seek advice about constipation 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 learn 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 their food so that it 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 (learn the required first-aid). 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 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.

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See also….

Resources/ references from Dementia Care Notes and related sites.

Pages with discussions relevant to above topics

Detailed interviews with dementia expert for home-based care for advanced dementia. 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 blog entries, the work and emotions around caring for a bedridden mother in late-stage dementia. Some entries, and a link for a video: Two years down the line: Care for a bedridden mother with dementia Opens in new window, All in a day: what care for a bedridden mother involves Opens in new window, A video describing care for a bedridden mother Opens in new window .

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.

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External links useful for late-stage dementia.

Home nursing related links:

Links related to end-of-life decisions, palliative care, bereavement, etc.

Some books have plenty of tips and illustrations to help caregivers handle late stage patients. Check out the suggestions below, or surf or for your specific needs.

American Medical Association Guide to Home Caregiving. This is a good starting point for a basic understanding of 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.

The Comfort of Home for Alzheimer’s Disease: A Guide for Caregivers (The Comfort of Home) by 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.

You can see these and 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. 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.

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Dementia Care Notes