What caregivers can do: Understand the stages of dementia and how they will impact the help the patient needs. Plan for the changes in the patient’s ability and the support required. Consider suitable home adjustments. Learn the required caregiving skills. The caregiving workload will increase over time, so consider available support systems. Make required adjustments in other responsibilities.
The patient’s abilities change as dementia progresses, and the care has to change accordingly. So caregivers need to keeping assessing the stage of the patient and adjust their plan suitably. (See Stages of dementia to know what these stages are)
- Care approaches as dementia progresses
- Caring for early stage dementia
- Caring for mid stage dementia
- Caring for late stage dementia
- Special aspects relevant for young onset/ early onset dementia care planning
- Plan for self-care (care for the caregiver)
- See also…
Dementia typically goes on for many years. The initial symptoms are mild and difficult to see but the damage keeps increasing with time. The type of help required changes, and the amount of help keeps increasing. It is important to understand how care may change over the years, so that caregivers can plan for it. While every patient’s progression is individual, caregivers can use a broad understanding of dementia stages to see what may be needed.
Dementia progression is usually discussed under three broad stages: early stage dementia, mid stage dementia, and late or advanced stage dementia. (read a discussion on the stages here: Stages of dementia). The caregiver’s focus of care will change accordingly.
Dr. Jane Tolman (University of Tasmania) suggests that the care goals be changed as dementia progresses. She proposes the following:
- First stage: Work to ensure dignity and autonomy. The care goal is maintaining the independence and enjoyment of the person with dementia.
- Second stage: Work to ensure safety. This is because the patient is more at risk because of decline in function and insight and more changed and risky behaviour.
- Third stage: Work to ensure comfort, dignity, and quality of life. This includes reassessing medications and treatment approaches.
Note that patients differ a lot in how fast their dementia progresses and how their abilities and dependence change. Different families have different views on what they consider dignity, autonomy, safety, care, quality of life, and so on. Also, using “stages” to discuss dementia or its care is not a rigid division. All these are just a convenient way to understand and plan care.
Early stage symptoms are mild. Patients can still do most of their activities, and function independently, but they may become more forgetful and begin to lose their ability to plan and to make decisions. The may have problems with language or have mood and personality changes. They can see there is something wrong, and they can withdraw or get agitated. They may lose initiative. Fortunately, medication can help some patients by reducing the impact of the memory loss.
The patient’s ability to cope with this phase depends on how well they and the society understand and accept dementia. In countries where awareness on dementia is high, people get diagnosed at this stage. They use this period to get in touch with their families and convey what they will want later. They make arrangements for their future. Unfortunately, in India, diagnosis in early stage is not common. Elders hide their mistakes and memory loss, as they fear they will be called stupid or mad. Children may not think anything serious has happened because they think these are old age problems. Or they think that pointing out problems will be seen as being disrespectful. As a result, families are unable to get a diagnosis. Even if a diagnosis is obtained, they do not understand enough about dementia and care. So families are not able to use the early-stage to plan for future care. Hopefully as awareness increases, more patients will get diagnosed early and care can also be planned better.
Patients can use the early stage time to adjust their lives for the future. They can make changes to their work, such as phase out work or business and reduce commitments. If they are living alone they can consider moving with or near their children or to assisted living facilities. They can execute legal documents that are useful later, such as power of attorney and living wills. They can also tell the family what they want in terms of medical treatment and other arrangements for the later years.
Sometimes, patients do not understand or accept dementia, but they may still be able to plan something if they accept that they have memory loss which will get worse.
In early stages, caregiver focus is encouraging the patient to remain independent and do their tasks.A Caregivers look at ways to make the tasks simple and do-able. They can observe how the patients do the tasks, see where the patients have difficulty, and make changes that will make the task easier so that patients can remain independent. Typically, this includes making changes in the house for the patient’s convenience.
Caregivers need to be alert about risks. While patients should be encouraged to do their tasks and handle their personal hygiene, caregivers must be alert and give help when needed. Mistakes will happen. Patients may try hard, but their abilities are declining. Caregiver will need to step in when patients are unable to do things. that happens. Caregivers must be particularly alert for neglect in personal hygiene, for missed meals and medications, and accidents.
At this stage, caregivers may not need to be present all the time. But they should check up on the patient very often. They should have safeguards against accidents. Even at this stage, caregivers should make sure their neighbors and relatives know about the problem and are alert. If a neighbor sees something suspicious, she can call the caregiver immediately.
Reality orientation and other aids are very useful. Often, patients are still able to use aids like reminder notes. They can still read large clocks and calenders. Caregivers can adjust the house to add such aids. Label containers and drawers using words and pictures. Place signs on doors. Put up charts to help the patient with the steps of an activity (like making tea). Give patients medicine boxes so that they can handle their medication. Make choices simple. Choices can be simplified. Reducing clutter to reduce patient confusion. If patients make mistakes such as mixing up shoes, leave only one or two pairs outside. Place lists of contact numbers at convenient spots so that patients can call when they need help. (see also: Adapt the Home for dementia patients)
Caregivers can plan and equip themselves for caregiving. They can use this time to plan for later stages, which require more intense care. Planning could include
- Take decisions about home and work to handle care for mid-stage dementia. Initiate changes where appropriate.
- Understand enough about the patient’s medical state.
- Understand which are the areas of the patient’s life where you may need to support later. Examples are bill payments, financial and tax decisions.
- Set up systems for handling investments and tax and finances, such as switching over to joint accounts, getting power of attorney, etc.
- Locate a doctor who will be able to advise all through the following years, when the patient will not be able to communicate problems.
- Learn more about the patient’s past, and the likes and dislikes. Even if you have known the patient for years (as in the case of a parent or spouse), you may not know many details or may not remember them.
- Collect material that could be used later for jogging the patient’s memories, such as photographs, old valued prizes, and other memorabilia.
- Start getting involved in various areas of the patient’s life so that the patient adjusts to the fact that you will now be more actively connected.
- Tell relatives, friends, and colleagues about the situation. Explain things so that they do not make fun of the patient when a mistake is made. Uninformed relatives and friends often give unsolicited advice to the patients. They tell patients to show more “will power” or be more “active.” They do not understand the nature of problems the patient is facing. Explain the situation to avoid these types of incidents.
Caregivers must remain alert about deterioration. As dementia progresses, the patient’s abilities decline. Caregivers must remain alert on how the patient is handling activities that may be unsafe. Examples are driving or traveling alone. Caregivers have to keep adjusting the environment and care to adjust for reduction in abilities. Patients may stop their medicines and an existing health problem may worsen. Patients may not be eating enough food or drinking enough fluids, and have health problems due to poor hydration and nutrition. Problems in such areas show that the patient may need more support from the caregiver.
Driving needs very regular review. If patients continue to drive even though their ability has reduced, the patient may get lost or cause an accident. Disorientation about location is common in dementia, so patients may keep driving in circles or reach some very distant place and not know where they are. And accidents can happen because of missed traffic signals, confusion, poor responses, and so on. If the patient was very used to driving around independently, stopping them from driving is tricky. Patienst may not believe or remember that they are no longer fit for driving. Some techniques work in early dementia when the person can appreciate logic, such as saying the car insurance has lapsed or the driving license has expired. But these do not work if the person forgets that these documents needed for driving. Other techniques used are removing the keys, disconnecting the car battery or parking the car at a different place or even selling it. More and more families in India use chauffeurs so that the car can be used for multiple family members through the day. Getting a driver may be a useful way to stop the person from driving and also ensure that the person can be taken out safely when needed.
Another area that requires alertness is smoking. If the patient is a smoker, there is a risk that the patient may set something on fire by mistake. Patients may not remember to extinguish cigarettes. Telling the person does to smoke will not work. Smoking is an addiction and the patient will find some way to smoke, often by borrowing or stealing cigarettes. De-addiction techniques can be tried, but they may be difficult for someone with dementia. The family may have to instal smoke detectors and fire alarms, depending on their assessment of the risk.
Mid-stage dementia is often most stressful for caregivers because the patients are still mobile and may harm themselves. They may wander. They get disoriented and confused and agitated. By this stage, patients sense that something is wrong with them. But they cannot fully appreciate what is happening to them or are very upset about their lack of control. Confusion and delusion cause several problems. They accuse people of stealing things that they have misplaced. Or they may remember an old watch they owned as a student, and on not finding it, accuse everyone of theft. They may hit people. They no longer recognize many people around them, and this is very frightening for them. Their behavior can get hurtful and embarrassing.
Also, patients may have medical problems, but these may not get recognizes as medical problems and therefore remain untreated.
Medical supervision is required. The patient should stay under the supervision of a doctor who understands dementia and can also advise on other problems the patient may face. For example, hearing and vision will need regular checkups, as problems in these will only increase confusion and the caregiver may not realize the patient is having problems seeing or hearing. You may need to decide on optional surgeries keeping in mind that the dementia will get worse and such surgeries may not be possible later. For example, caregivers may need to decide whether the cataract should be operated now if the doctors feel the patient will not be able to handle the surgery later.
Healthy habits will need to be supervised. Patients tend to neglect themselves. Caregivers have to make sure that the patient is eating nutritious food, drinking enough liquids, and is doing enough exercise.They need to check that the patient wears appropriate clothing and footwear.
Major changes may be needed in the home. During mid-stage, patients are mobile and can harm themselves. Caregivers must see which things in the home setting can cause problems. They need to use creative solutions to make the home safe and friendly for the patient. (see also: Adapt the Home for dementia patients)
Caregivers must learn how to talk to the patient, help the patient, and handle changed behavior. Normal common sense is not enough for this, because our normal way of thinking assumes the patient can understand, remember, and do things. But dementia has affected all these abilities. So we need caregiving skills and we need to change our way of thinking and acting to take the patient’s mental and emotional situation into account. (see also: Handling Behavior Challenges)
Constant availability and alertness is required. Typically, patients cannot be left alone. It may not be possible to go out even for the short times needed to buy groceries or withdraw money from an ATM if there is no one to leave with the patient. The patient may agree to stay alone and promise not to do anything or go anywhere, but the promise cannot be depended on because the patient may forget it.
If an attendant is being hired, the home has to be adjusted to give the attendant enough space, while also taking care of safety.
Providing care can be physically tiring. Patients need at least some help for most tasks. Caregivers need to be alert that all tasks are done. They need to guide the patients to start the tasks. In some cases they have to do the task for the patient. For example, patients may not be able to take a bath alone. They may forget to apply soap or forget to rinse the soap, or to dry off. As a lot of physical work is involved in mid-stage care, caregivers can ask a physio-therapist how they can help the patient without harming their back or getting too tired.
A daily routine is needed for the patient. A good routine has a mix of meaningful and enjoyable tasks the patient can do, and gives the patient a predictable way to spend the day. It should include sufficient exercise, because exercise improves health and reduces restlessness.
Ongoing review is required because dementia keeps getting worse. Caregivers need to observe how the patient does tasks. They have to simplify tasks and get aids and help the patient accordingly. More adjustments in the house can be useful.
Caregivers often need to make major adjustments in their lives. They need to make life changes to remain close to the patient all day. This may require switching to a profession or job that can be done from home. They may have to give up work. Caregivers trying to balance patient care and their other responsibilities often need to use services like trained attendants, day care facilities, and respite care. These make it possible for caregivers to work or do chores outside the house without affecting the patient’s safety.
Caregivers may face financial challenges. It is common for family income to reduce because of what is spent on the patient and also the loss in earning because some family members need to reduce or stop work to take care. Families need to plan for finances. They may need to identify other sources of income. This arrangement for money has to be done in addition to the caregiving work they are already doing. They may need to discuss finances with siblings and relatives. India does not have schemes for assisting families for care of patients, but you can check if subsidized medicines are available. Some income tax deduction for medical expenses incurred is available under section 80DDB. This requires a medical certificate issued in the prescribed format by doctors who meet the criteria of the income tax section. Information on this can be seen by searching the Income Tax India site or viewing more details for the act. Use the links on the pages to get definitions of terms and any required forms. Tax consultants may be able to give more information. Also note that only some types of doctors are authorized to give the required certificate.
Several support systems are needed at this stage. Caregivers need support systems to help patients. For example, they may need to handle other medical problems of the patient, such as infections, and problems that are common in old age. So they need doctors who do home visits and who understand the patient’s condition is very helpful. There are many such areas where they need support.
Caregivers have to be ready for emotional challenges. Patients often show difficult behavior in mid-stage dementia. Outsiders often misunderstand the situation, or believe the patient who complains to them. They are critical of the care, and suspect neglect. Hurtful comments are common. Caregivers have to be ready to face and handle difficult behavior, which can be hurtful. They also have to be emotionally ready for the isolation they feel when they are criticized, and when their social circles reduce.
Caregivers have take care of their own health and emotional state. Caregiving is often full-time work and very stressful. Caregivers are often physically, mentally, and emotionally tired. They may be too tired to look after their own health and well-being. They are prone to caregiver stress and isolation. Support groups can be used to share stories and tips and feel part of a community. Caregivers can also see how to get help from the family. Short breaks and vacations can help recharge the caregivers. See below for more on planning for self-care, and also see the page: Caregiver emotions and stress.
Caregivers may find care more fulfilling if they and the patient jointly enjoy activities. Often, caregivers are so busy handling challenging behavior and doing all the tasks needed for care that they don’t think of having fun with the patient. However, if they spend some time making the day nicer for the patient through fun-filled or meaningful activities, the patients are able to relax more. Patients are more pleasant and peaceful and less likely to show difficult behavior. Such activities also give the caregiver time to relax and enjoy the company of the patient and reduce caregiver stress.
By this stage, the patient is dependent for all activities. The patient is unable to explain things or understand others well, and has poor body coordination. Incontinence is common. Patients often become bedridden. They fall ill more often and have more health problems. Some of these are because of dementia and some are because of other illnesses which don’t get detected as patients cannot tell when they are unwell. Care for such patients needs very different type of planning and also knowledge of home nursing. It is also more emotionally exhausting for many caregivers because the patients are so clearly getting worse.
In India, families typically take care of patients at home even at this stage. Care for late stage is an extensive topic, and covered in detail on our page at: Late-stage care.
Some dementia patients are less than 65 years of age. This is called young onset dementia, or younger onset dementia, or early onset dementia. A young-onset patient may be in the 40s and 50s, or even younger. Most such patients have Alzheimer’s Disease or fronto-temporal dementia (FTD). The World Health Organization estimates that around 6-9% patients are young onset patients.
Care for young-onset patients is usually handled by the husband or wife, who is also at a busy and active stage of life. Young children, still studying or just starting their careers, may take on part of the work. Elderly parents, facing their own age-related problems, may also become caregivers.
Most dementia care discussions assume that the patients are retired and frail, and not having many responsibilities. But younger patients are leading active lives, doing work, and handling many responsibilities. When they start facing dementia problems, the caregiver has to also see how to take over or reduce the work the patient was doing. Above in this page we have discussed the care planning that depends on the dementia stage. For young onset patients, you also need to pay attention to some more things because the patients are younger and more active.
If you have to support a young-onset dementia patient, please see our page: Plan care for younger persons with dementia.
Caregivers are so busy helping the dementia patient that they may forget to take care of themselves. They think that they will be able to do all the work if they try hard enough. Then the dementia gets worse and their work keeps increasing. They are not able to take breaks. They are confined to home and get isolated from their friends and social circles. They get tired and stressed. Because they are now too tired and overwhelmed, they are not able to take the additional steps to take care of themselves. Persons around them may not know they need support. Even when they offer help, they may try to help with the patient’s care, and not think of doing things for the caregiver’s health and well-being.
Caregivers need to plan self-care in the beginning, when they are not so overwhelmed. They should try to get a good understanding of their role and how it will increase when the dementia gets worse, so that they can see what sort of things they need to do to ensure self-care. Some such self-care things need time to do, and so they need to be planned for. This is just as important (or maybe more) as planning care for the patient. Read the page Understand the caregiver’s role for a detailed discussion on the role and the areas to consider for self-care planning.
Some relevant interviews on this site:
- Choices made by caregivers and their family members affect the ability to give care. Rajesh’s mother-in-law is a dementia patient. He describes how his choices affected how he supported his wife, the primary caregiver. He shares tips on various aspects to be considered by the family of a dementia patient: Mistakes made, lessons learnt, tips shared .
- Families need time to set up appropriate care: A family recognizes dementia and adjusts for it .
- Caregiving affects everyone in the family: His condition affected every sphere of my life .
- A doctor-caregiver says planning gets missed out:When you are in the rut of things you can’t think
- A financial analyst discusses how to plan for the possible problems that may happen when dementia affects the ability to take decisions. This article is aimed at American readers and may not be fully applicable in India. Also, that a lot of caution is needed for financial decisions. However, the article may help generate ideas on what could be considered. Then we can see how to use it for our situations. Read the article here: 8 Alzheimer’s Financial Protection Tips
- Be prepared for emergencies. Read a helpful list here: Preventing and being prepared for emergencies.
[This page was last updated in June 2015]