A late-stage dementia patient is dependent on others for all activities. He/ she is bed-ridden, or almost bed-ridden. Caring for a late-stage dementia person is very different from caring for a early dementia patient or a mid-stage dementia patient (see: Plan care for various dementia stages).
The person with dementia finally becomes fully dependent for all activities, bedridden, and uncommunicative
What caregivers can do: Set up the home for late-stage dementia care. Learn the necessary home nursing and other skills. Use support systems, stay in touch with doctors. Be ready to coordinate with the family and take major decisions.
In India, with hardly any assisted living centres that accept dementia patients, care for late stage patients is done at home. Home must, therefore, be adapted for such care; dementia caregivers must discuss with their doctor for information on setting up home for care, and for the skills to learn for such care. Home care of a late-stage dementia patient requires good access to medical support, such as doctors who do home visits, pathology labs that can take samples from home, and other such facilities. This is the final stage of the disease, and the patient will begin to deteriorate and fade away, and finally die. The stage may be short or may extend for years.
This page discusses an indicative (but not exhaustive) list of what caregivers need to know.
On this page:
- Setting up the home for care
- Setting up support systems
- Learning home nursing
- Understanding the patient
- Remaining alert on problems related to extended stay in bed
- Remaining alert on co-existing or new medical conditions
- Learning about end-of-life care decisions and consulting with family
- Relating with the patient
- Grief and counselling
- Video from a caregiver from India sharing her experience
- Instructive videos and links
- See also…
There are several things to arrange in the home to manage care for a bedridden patient. Caregivers also need to learn various types of home nursing skills. Learning the proper way to help the patient for various activities makes the tasks simpler for caregivers and patients, and reduces the chances of injuries for both of them. (See below for some instructive videos that demonstrate some important home care skills for bedridden patients)
The patient’s bed needs to be convenient for handling the patient, otherwise caregivers will tire easily and hurt their backs. Patients will need to be propped up in sitting position and then lowered back in a supine position several times a day. All these activities are difficult to do if the patient is lying in an ordinary bed. A bed rest can help, but requires strength. The caregiver also needs to tend to several activities through the day, such as cleaning, feeding, turning, etc.
Given that the bed-ridden phase could last for months, even years, caregivers should seriously consider getting a hospital bed, which can be hired or bought. A simple hospital bed is of an appropriate height and allows the patient to be propped up into a sitting position by cranking a lever. A lot of physical effort is saved. (see also: Adapt the home for dementia patients)
Bed-ridden patients are prone to pressure sores. As part of the setup, caregivers should consider using mattresses that allow the pressure points to keep shifting and reduce the chances of pressure sores. Patients will still need to be turned every few hours (part of home nursing skills) but the chance of pressure sores go down a lot with the use of such mattresses. Consult doctors for what is suitable. Examples of what can be considered include water beds and alternating column air beds.
Wheelchairs, walkers, and walking sticks are sometimes useful. Again, the doctor can be asked for advice.
Support systems are a must for home nursing of a late-stage dementia patient. Caregivers should be able to get home nursing help for services such as:
- blood and urine tests, with sample pickup from home
- portable ECG
- nursing assistance for wound inspection and care, dressing, bed sore dressing, diabetic foot care
- nursing assistance for IV/ injections, nebulization, enema, catheterization, bladder wash
- home visits by physiotherapists
- home visits by doctors
Systems are also needed to handle for emergencies when patients may need to be transported to a hospital, such as phone numbers of ambulance services
Basic skills are essential, such as how to clean the patient, change the bed sheets (with minimal lifting required), bathe the patient in bed, feed the patient, and transfer the patient to/ from a wheelchair. Often, these can be learned by watching videos and watching trained nurses perform these tasks. Physiotherapists should be consulted if any activity is causing back pain to the caregiver.
Additional activities include range-of-motion exercises advised for a bed-ridden patient. Again, the physiotherapist or doctor can advise on specific exercises suited for the patient.
It is also advisable to learn first-aid.
With the patient’s inability to communicate, caregivers have to increasingly guess what is needed at any given time. Would the patient be hungry now, or later? When the patient frowns at the soup or spits it out, is it because the soup has carrots, or the salt is too little, or the soup is too spicy? What sort of stories/ chatting does the patient like more? Which photo album will cheer the patient? How to know when the patient is bored? It is good if there is continuity of caregivers at this stage, because caregivers will be familiar with the patient’s history know the patient’s likes and dislikes.
If caregiving is being shared in the family, moving the patient from one sibling’s home to the home of another sibling may not be easy or practical, and may not be comfortable for the patient. These should be factored in while deciding what to do at this stage.
It is necessary to have frequent home checkups of the patient by a doctor, to identify problems early.
Caregivers also need to learn how to prevent bedsores, or handle them if they occur (with the advice of the doctor). Patients may get a number of problems, such as infections, sprains, loose motions, and constipation. They may scratch themselves and hurt themselves. Because of extended stay in the bed and limited movement, they may get contractures. Caregivers must remain alert and start any remedial action in time. Doctors can help caregivers understand what to be careful about.
Oral hygiene (also called mouth care, which is keeping the teeth and mouth clean) is particularly essential as often patients aspirate food and liquid into their lungs, and an infection from the mouth can spread to the lungs if proper hygiene is not maintained. Aspiration pneumonia, which is the inflammation of the lungs and airways because of breathing in foreign material, is very common amongst late stage patients, and a frequent cause of death.
Most patients also have other medical conditions, or could develop them because of age and other risk factors. Unfortunately, dementia is a “life-limiting” condition. That is, having dementia hastens death because of the damage it causes and also because patients are often unable to notice or communicate their other health problems to their caregivers, and thus they don’t get timely treatment for these.
Try to get a good GP who understands the patient’s condition and treats the patient accordingly. Co-ordination between specialists is also required. Regular home checkups by a doctor will alert the family about problems. Depending on the existing medical problems, age, and other risk factors, the doctor may suggest regular monitoring of various health aspects. While the requirement varies across patients, examples of monitoring done include blood pressure, blood sugar, haemoglobin, liver and kidney functions, thyroid, vitamin B12, etc. Eye checkups (such as tests for glaucoma) may be advisable depending on the patient’s past history. Consult the doctor and draw up a schedule for what should be monitored and at what frequency.
In addition to monitoring existing medical conditions and watching out for new medical problems, caregivers need to be extra alert on judging the facial expressions and body language of the patient, to know whether the patient is in pain or otherwise unwell. Patients of dementia are often unable to say they are in pain, or may misreport the location of pain, and they may not even know when they have fever. Lethargic behaviour, unwillingness to move, and other such behavioural indications can warn caregivers that there is some problem.
One particular challenge of getting medical attention for problems that require a trip to a clinic/ hospital. With the patient being unable to move, every visit to a doctor outside the home is a major activity, and can be frightening to the patient who may not understand why he/ she is being “tortured” by being taken away from familiar surroundings into an ambulance and then a clinic/ hospital. Trade-offs need to be evaluated to decide whether to take the patient for a checkup. This is why it is very useful to have a doctor who knows the patient well and can help the caregiver decide whether to subject the confused and frail patient to an external checkup.
Decision making for a dementia patient is different from that of other patients, because it is not possible to explain to the dementia patient why such a checkup is needed. When taken for a checkup, the patient faces doctors and nurses who are strangers, and is in a strange surrounding, which can be bewildering and alarming. Aggressive treatments may similarly alarm the patient, who may try to pull out a feeding tube sticking from her nose because she does not understand what it is and why it is needed. Research studies are available that examine the effectiveness of some treatments for dementia patients as compared to other patients.
Some of the areas we may need to decide are
- whether to opt for aggressive use of antibiotics and other treatments, or for less aggressive methods with focus on comfort of the patient
- if the patient reduces or stops eating, whether to use tube feeding or not
- whether to hospitalize the patient or continue to treat at home for severe conditions
Sometimes, people assume that use of aggressive treatments and hospitalization are inevitable and that not doing so is tantamount to “killing” the patient. Yet there are some studies to show that these treatments do not increase either the life or the quality of life of a dementia patient. The decision, therefore, is not an obvious decision and requires weighing pros and cons.
Different family members can have different views on what is best. They may want to try a treatment, not so much because the patient may benefit from it, but because they feel that if they do not do so, they are guilty of neglect, or that people around them will be critical. Sometimes, when a doctor says the patient needs to be admitted to a hospital, caregivers are too intimidated or overwhelmed to ask about the advantages and disadvantages. Once in a hospital, it becomes even more difficult to take a decision, because the doctors there may make it appear that taking the patient home to familiar surroundings is as good as killing the patient for lack of treatment. They do not always tell the caregiver about the disadvantages of a hospital stay.
One very relevant aspect here is “palliative care”, (Wikipedia explains it as: “an area of healthcare that focuses on relieving and preventing the suffering of patients”). Palliative care is a relatively new multidisciplinary field, and while palliation is intended to support quality of life of all patients, most application of palliative care has happened in cancer and HIV. Caregivers of dementia patients can avail the advice of palliative care experts to see how best to keep a late-stage patient comfortable and pain-free, but should be careful to select a specialist with knowledge and experience of dementia. A suitably experienced palliative care specialist can help caregivers understand the multiple aspects of each available option, and take decisions they are comfortable with. Whether the caregivers decide on aggressive treatment or not, the decision is best taken after due thought rather than because of pressure of people who do not know the patient or family too well. For links that discuss palliative care in the context of dementia, check the resources here. For resources in India, check here for resources that include directories for all-India. There may also be some additional suggestions on the specific city-wise resource pages.
It is good 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 legislation on the doctors’ obligation to follow directives such as “do not resuscitate” but India has no such law. Additionally, doctors have conflicting interpretations about what makes them liable for malpractice/ neglect, etc. Laws regarding advances directives and living wills are still being discussed and the current status is fluid, and doctors may be uninformed about the latest status. Hospitals may find it safer to insist on aggressive treatment or require a court order before they act upon a family’s request to withdraw support. They may refuse to discharge a patient who is obviously dying. Families, too, may feel uncertain about what is legal and ethical. It is best if the family obtains clarity from legal experts/ palliative care experts on current laws regarding withdrawal of feeding, what doctors are required to do to “sustain life”, what is considered medical treatment, what is defined as basic care, etc. Also, because different hospitals may choose different interpretations, families should opt for hospitals that have approaches consistent with what they want. (Note: the legal situation regarding this may have changed: please check for yourself).
All the above points deal with handling the patient’s medical well-being in ways that are comfortable for the patient.
As caregivers, we suddenly find ourselves in a situation where the patient is no longer showing challenging behaviour, and is, in fact, barely communicating. It is, therefore, easier to feel concern and love again, without that edgy tension that the earlier phase often induced. On the other hand, we can also see that the patient is dying, and that is often difficult to accept. Some members of the family may be so uncomfortable that they stop entering the room.
It is possible to have an affectionate and fulfilling relationship even with an apparently uncommunicative bedridden patient. Though they may not talk much, patients still sense affection and may smile, or respond if we touch them or squeeze their hands. They may be able to hear us talk, and even if they do not fully understand us, they can sense us talk and may find it soothing. We, too, can find it relaxing to just spend time with the patient without really expecting anything.
Examples of things patients may enjoy, and which family members can do with them include listening to music, talking about pleasant incidents of the past, telling stories, showing family albums, etc. Just sitting near the patient can also provide companionship. The patient’s room can also be made more pleasant for the patient by putting up large pictures of family members/ scenes/ mythological figures that may comfort the patient, and lighting incense that the patient likes.
Many of us are overwhelmed at this stage by the imminence of death. Counselling can help. It may help us face our imminent loss and give us the strength to face the caregiving cheerfully and make the most of the time we still have with the patient.
The death of the patient is often a major setback to caregivers, who are so closely tied to the identity of a caregiver that they feel a great vacuum in their own identity. It is like they are not needed any more.
Over the years, the caregivers have made more and more adjustments to care for the patient. Often, they have had to change jobs or leave jobs. They have moved out of their old circle of friends and not had time to make new friends. All this time, caring for the patient occupied a big chunk of their time and energy. Now there is no patient to look after, but they have no company. They do not feel anyone understands them. Again, counselling can help.
Caregivers also need to be gentle with themselves as they adjust to the fact that they are no longer carers.
[Some links for bereavement/ recovery (not India-specific, but may be helpful; more suggestions for useful links welcome): 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.
A good way to pick up the necessary skills is to read books on home nursing. Some material is available online, such as How to Do Home-Nursing Procedures or visit explanatory sites like How to Care for a Bedridden Patient and How to Care for Elderly Bedridden Patients
Below are some additional links that explain some important concepts and techniques for care of bedridden patients. These explanations (and demonstrations) are done assuming a institutional setting and available equipment, and are not specifically for dementia patients. Home caregivers can still use these explanations and videos to get a good understanding of the concepts and techniques, and see how to apply them in a home setting, for a patient who may not understand what is happening, and cannot communicate or cooperate. This is not an exhaustive list of topics to understand, but gives a starting point for some of the important activities that caregivers need to assist bedridden patients with.
Please check up with your doctor regarding what you need to know.
- Bed sores (also called pressure sores): 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 exact steps differ on the type of bed being made, 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, 2MB+) 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.
This book is also available as a Kindle eBook, which means you can buy it online and start reading it within minutes on your laptop/ tablet/ Kindle! Read a sample/ read reviews/ buy it from: Amazon.com or Amazon.in.
(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 April, 2015]