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 patient keeps getting worse and will finally die. Caregiving for patients at this stage is very different from caring for early or mid stage patients.
- Set up the home for care.
- Set up support systems.
- Learn home nursing.
- Understand the patient.
- Remain alert on problems related to long stay in bed.
- Remain alert on other medical problems of the patient.
- Learn about end-of-life care decisions and consult with family.
- Stay connected with the patient.
- Handle grief.
- Resource: Video from a caregiver from India sharing her experience.
- Resource: Instructive videos and resources on home nursing.
- See also….
You need to make many changes at home to care for a bedridden patient. 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 patient.
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 patient to sitting position and then return the patient 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 patients 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. (more on bedsores below)
Wheelchairs, walkers, and walking sticks are sometimes useful for the time when the patient is having problems but is not fully bedridden. Ask your doctor for advice.
Support systems are a must for home nursing of a late-stage dementia patient. 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
- Hhome visits by doctors
Also think of how you will handle emergencies when patients have to be taken to a hospital. Keep the phone numbers of ambulance services easily available.
Care for a bed-ridden patient requires doing many things while the patient is on the bed. This work requires home nursing skills.
Learn how to clean the patient and change the bed sheets (with minimal lifting), with the patient still in bed. Learn how to bathe the patient in bed (including shampoo), feed the patient, and transfer the patient to and from a wheelchair. You can watch videos and watch trained nurses perform these tasks. Ask physiotherapists to show you safe ways to do these activities. That will ensure you are less tired and less likely to hurt yourself or the patient.
Patients need to get exercise. A physiotherapist or doctor can tell you which exercises are required. Usually these include range-of-motion exercises. You will need to help the patient do them. If the patient does not do them, you need to learn how to do passive range-of-motion exercises. Here you hold the patient and gently and safely move their arms and legs, etc.
Also learn or refresh first-aid skills.
Late-stage patients 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 patient hungry now, or should you give food later? Is the patient 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 patient, which topics should you chat about? What would the patient like to hear? Which photo album will cheer the patient? Is the patient bored? Because all such care depends on understanding the patient, 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 patient from one home to another every few months. This may not be possible or comfortable for the patient in late stage. Think about this aspect when planning care.
Patients 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 patient 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 patient’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. Patients 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 you need 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 patients. 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 late stage dementia patients, and a frequent cause of death.
Patients already have problems because of dementia. They may also already have other medical conditions. They may also get new medical problems 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 patients may not notice or tell you about their health problems. This means they do not get treatment in time and so they get more ill and may die.
Try to get a good doctor who understands the patient’s condition and does regular home checkups. The doctor may suggest regular checks based on the patient’s 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’s 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 patient to know if the patient is in pain or having some other problem. Dementia patients do not tell when they are in pain, or they give a wrong location of their pain. They don’t even know when they have fever. Watch out for signs like the patient seeming very disinterested or lazy, unwilling to move, refusing to do something, frowning, etc.
Typically people visit a clinic or hospital for medical attention. Such visits are very difficult for a late-stage dementia patient. 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 patient. Such visits are also very difficult for the patient. Patients 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 such a trip outside home. A doctor who knows the patient can help you decide whether to take the confused and frail patient for an external checkup.
Making decisions about care for a dementia patient is different from making decisions for other types of patients. This is because late-stage dementia patients 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 patient be given aggressive treatment like antibiotics or even surgery, or should you choose less aggressive methods and focus on comfort of the patient
- Whether to use tube feeding if the patient reduces or stops eating
- Whether to hospitalize the patient 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 so is like killing the patient. But studies show that such treatments do not increase the life of the patient. They don’t even improve the patient’s 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 to the patient. They expect others to blame them if they don’t make every effort. They may not stop to think whether the patient will benefit from it. 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 more difficult once the patient 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 a dementia patient.
To handle such decisions, learn more 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 more often used for cancer and HIV patients. You can talk to palliative care experts to understand how to keep a late-stage patient 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. But whatever you choose, your decision can be based on data and discussion. Then you will not feel bad later.
See: relevant web site links. For resources in India, check here for resources that include directories for all-India. Additional suggestions for resources may be seen on specific city-wise resource pages.
To understand the sort of problems that lead to death in dementia patients, read a discussion at Alzheimer’s Reading Room on how Alzheimer’s patients die.
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 patients and make this last phase of life easier and more comfortable for them.
In late stage dementia, patients are usually more 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 patient 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 patient. Patients 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 patient without doing or expecting anything.
Late-stage patients 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 more pleasant by putting up large pictures of family members, scenes from mythology, or comforting pictures of gods. Some patients like incense.
When the patient 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 patient 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 patient.
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 patient. 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 patient’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 any more.
You need to be gentle with yourself as you adjust to the loss of the patient and also to the fact that you are no longer a carer. This often takes much longer than what you may expect. Counselling can help to adjust to this major change and start looking at other aspects of life.
[Some links for bereavement and recovery (not India-specific, but may be helpful): Grief for Spouse with Dementia or Alzheimer’s, Rebuilding Your Life After the Death of Your Care Receiver]
Swapna Kishore, a dementia caregiver in India, looked after her mother at home till the end. This included care for her mother through the 2.5 years when her mother was bedridden and fully dependent. In the video below, she shares her experience of care in this stage.
You can pick up the necessary skills by reading books on home nursing. Some material is available online, such as:
- How to Do Home-Nursing Procedures
- How to Care for a Bedridden Patient
- How to Care for Elderly Bedridden Patients
You need to be familiar with health and home care concepts for late-stage care of bedridden patients. Here are some more links that explain some important concepts and techniques. These assume the care is being given in an institution which has more facilities and equipment, and are not specifically for dementia patients. But you may still find them useful to understand the concepts and techniques. You can then apply this knowledge for your situation This list of topics is not exhaustive, but it will give you a starting point for important activities you need to know about.
Please check up with your doctor for a more complete list of topics and for information and advice.
- Bed sores (also called pressure sores, pressure ulcers, and decubiti): An explanation is available here: Pressure sores and a video with pictures of sores at various stages and how to prevent them is available here: Pressure Ulcer Education. Here’s a paper discussing the advantages of having an alternating air pressure mattress.
- Aspiration pneumonia (a very common problem in late-stage dementia patients): Read explanations and descriptions here: Wikipedia page, NIH pages and Medscape page.
- Making the bed/ turning the patient/ lifting and transferring the patient: These are typical home nursing skills, and any nurse should be able to demonstrate how to do this. Videos on this topic are described under “making an occupied bed”. The specific steps depend on the type of bed and whether it includes draw sheets or not, but the basic technique of fan-folding the sheets and rolling the patient remain the same. Explanations are available at various places, such as How to Make a Turning Sheet for the Bedridden, How to Move Someone Who Is Bedridden, and How to Change Bedridden Alzheimer’s Patients. An example can be seen here: Making an Occupied Bed. Read a discussion on lifting techniques.
- Diaper change and perineal care: Check this for how to change a diaper: How to Change the Diaper of a Bedridden Patient: To maintain appropriate hygiene, be particular about perineal care. An example of how this is done in hospitals for a female patient is shown here: Perineal care.
- Bed bath: While some of the documents above explain a bed bath, here is a video demonstrating this in an institutional setting: Giving a Patient a Bed Bath
- Oral hygiene: Oral hygiene is very important for a bedridden patient. This video, Oral Hygiene For The Bedridden Patient demonstrates techniques for both patients who cooperate and for uncooperative patients.
Interviews on this site with caregivers handling long-distance care of patients 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:
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 vey useful. The following documents are particularly helpful:
- The Dementia at the End of Life page gives an overview of end-of-life, and has links to detailed pages. It also has a download link for a 68 page document (PDF file), a document that discusses key issues at the end of life, such as finding hospice care, what happens at the time of death, managing grief, and preparing advance directives along with resources for more information. While some discussion may not apply to India, there is plenty of information relevant even in the Indian context.
- The Late Stage care 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 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 document from Alzheimer’s Society, UK, provides a very informative discussion on what happens towards 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, 4MB+) is a document from Australia discussing severe and end-stage dementia and related care and palliation. It is very informative and useful to 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?, Dysphagia Management for Older People Towards the End of Life, A Safer Approach to Risk Feeding, and Risk Feeding.
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.com, or, if you are in India, see Amazon.in or Flipkart 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.com, or, if you are in India, see Amazon.in or Flipkart or any other vendor.
(You can also see our full books/ DVD suggestions at: Books and DVDs
Additional links/ books: One particularly relevant book here is Caring for a Loved One with Advanced Dementia, available at this link. 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.
[This page was last updated in June, 2015]