The abilities of someone with dementia keep reducing as dementia gets worse. Care has to be continually adjusted accordingly.
What caregivers can do: Understand the stages of dementia and how they will impact the help the person needs. Plan for the changes in the dementia person’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.
- Care approaches as dementia progresses.
- Care for early stage dementia.
- Care for mid stage dementia.
- Care for late stage dementia.
- Special attention to challenges when risk of serious infections and complications is higher.
- Special care aspects for younger onset/ early onset dementia.
- Care for the caregiver (self-care).
- 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 and amount of help have to be adjusted accordingly. Families must understand how care will change over the years, so that they can plan for it.
The progress of dementia is usually discussed under three broad stages. These are: early stage dementia, mid stage dementia, and late or advanced stage dementia. These stages give an overall understanding that can be used to plan care. Dr. Jane Tolman (University of Tasmania) suggests the care goals for these stages as under:
- First stage: Work to ensure dignity and autonomy. The care goal is to maintain the independence and enjoyment of the person with dementia.
- Second stage: Work to ensure safety. This is because the person with dementia is more at risk because of decline in function and insight, and more changed and risky behavior.
- Third stage: Work to ensure comfort, dignity, and quality of life. This includes reassessing medications and treatment approaches.
Different families have different views on what they consider dignity, autonomy, safety, care, quality of life, and so on. Also, the “stages” of dementia are just a simple way to understand how dementia gets worse. These are not fixed and rigid divisions. Though stages help get an overall understanding, every person’s symptoms are different and they progress differently. Families have to use their own observations and judgment when deciding what they need to do for someone with dementia.
Planning for early stage dementia can be done both by the persons with dementia and their family and friends. At this stage, persons with dementia are able to think about their situation, understand dementia, tell others what they want, and plan for their future. Family members can help them live meaningful, dignified, and independent lives. It is also possible to plan for later stages when more support will be needed.
Persons can adjust to their dementia situation. They can find ways to continue living in safe and meaningful ways. Early stage symptoms are mild. Persons with dementia can still function independently and do most of their activities with little or no help. But they may become more forgetful and begin to lose their ability to plan and to make decisions. They may have problems with language or have mood and personality changes. Fortunately, medicines can help some patients by reducing the impact of the memory loss.
Once persons with dementia understand that dementia is causing them problems, they can learn more about it. They can adjust emotionally to their dementia and how it will affect their future. They can think how to do what they want to do while remaining safe. This requires some adjustments in their activities and what they expect from themselves. They may need to ask for some help.
Persons with dementia may decide to change how they spend their time and energy. Some may pick up activities they had wanted to do later in life. Some slow down and spend more time on their hobbies or with their families. Some continue their life like they were doing before. Some even get involved in spreading dementia awareness. What is important is, they can choose their direction based on an understanding of dementia and how it may impact them.
Persons with dementia can make changes for a better future. Dementia will lead to reduced abilities and increased dependence. This affects what they can do in future. In this early stage, they can decide what changes they want in their future. For example, if they are working, they may phase out work or business and reduce commitments. If living alone, they can think of how they will move with or near their children. Or they can check out assisted living facilities for themselves. They can create legal documents that will be useful later. Examples are power of attorney and living wills. They can discuss with their families what they want in terms of medical treatment and other arrangements for the later years.
Caregivers can help persons with dementia remain independent and do their tasks. The support required is low in this early stage. Caregivers can find ways to help them live meaningful, dignified, and independent lives.
One activity to plan for this is home adaptations. Caregivers can adjust the surroundings so that persons with dementia don’t get confused and can continue to do their tasks independently. Reality orientation techniques are very useful. Early-stage dementia persons are often able to use aids like reminder notes. They can read large clocks and calendars. Adjust the house to add such aids. Label containers and drawers using words and pictures. Place signs on doors. Put up charts to help them with the steps of an activity (like making tea). Give them medicine boxes so that they can handle their medication. Make choices simple. Choices can be simplified. Reduce clutter to reduce their confusion. If they make mistakes such as mixing up shoes, leave only one or two pairs outside. Place lists of contact numbers at convenient spots so that they can call when they need help.
Another thing to do is to look at ways so that persons with dementia can do their tasks independently or with very little help. They may be able to explain what their problems are. Caregivers can observe when the persons with dementia are slower or more awkward while doing tasks. Make changes that will make the task easier. Or know when to offer help. Give help only to the extent needed, so that they feel capable and independent.
Caregivers can prepare for later care.Care in early stage may not need the caregivers to be present with the dementia person at all times. Effort required is also not as high as it is later. So caregivers can use this time to understand dementia and its impact better, learn the skills they will need, plan for later care, and start making the life changes that will be needed later.
Understand dementia, gather information, and learn care-related skills. This could include:
- Understand about dementia, its various symptoms, how it progresses, and how it may impact the person now and later.
- Understand about medicines, when they can help, and what the limitations of medicines are.
- Understand enough about the person’s medical state (dementia and other health conditions).
- Learn more about the past, and the likes and dislikes of the person with dementia. Even if you have known the person for years (as in the case of a parent or spouse), you may not know many details or may not remember them.
- Understand the areas of the person’s life where you may need to support later. Examples are bill payments, financial and tax decisions.
- Learn how to interact with and help someone with dementia. Learn how to adjust your way of talking to make it easier for them to understand you. Learn how to help them. Read up more on changed behaviors, why they happen, how to adjust to them, and how to handle behaviors that can harm the person with dementia or others.
As dementia worsens, most persons with dementia find it difficult to sign documents. They may not be able to sign cheques. They may not understand finances, investments, and tax returns. If the person agrees, simplify and rearrange finances and taxes so that you can manage them. Discuss this when the person is still in early-stage dementia. You and the person can talk to tax consultants, lawyers, and well-wishers. Possible actions include creating joint accounts, placing jewelry in jointly-operated lockers, keeping some extra cheques signed by the person, enabling Internet banking, and so on.
At times, if the person with dementia cannot handle their funds, but the funds are required for care expenses and liquidity, families may need to go through the required procedures to manage the funds of the person with dementia. This may be in the form of a power of attorney, or may include getting guardianship under the appropriate laws (most likely the Disabilities Act) using due legal process. Contact a lawyer for this. Some links are given in the See Also section.
Plan for later care, and start making required changes. This could include:
- Think about how you will adjust home and work responsibilities to handle care for mid-stage dementia.
- Start making changes to adjust your various roles and responsibilities. This could include looking for a more flexible job or selling off your business, or moving house.
- Set up systems for handling investments and tax and finances. Examples are switching over to joint accounts, getting power of attorney, and so on.
- Find a doctor who can advise all through the following years, when the person with dementia will not be able to explain the problems. Look for doctors whom everyone is comfortable with, and who may do home visits.
- Collect material that could be used later for jogging the memories of the person with dementia. Examples are old photographs, old valued prizes, posters and songs of old movies, and other objects the person may have memories of.
- Start getting more involved in the person’s life so that the person gets used to the fact that you will now be more actively connected. You will also be able to get more correct information.
- Tell relatives, friends, and colleagues about the situation. Explain things so that they do not make fun when the person with dementia makes a mistake. Uninformed relatives and friends often give unsolicited advice. They tell persons with dementia to show more “will power” or be more “active.” They do not understand the nature of problems the person is facing. Explain the situation to avoid such incidents.
- Plan for self-care. (This is discussed more in another section of this page.)
- Be ready for emergencies.
Caregivers need to be alert about risks, and about the dementia getting worse. Persons in early stage dementia can do many things alone or with some help. So they don’t need full-time help. But their ability changes as the dementia gets worse, which could happen slowly or rapidly. Caregivers have to remain alert about reducing abilities, mistakes, and risks. They have to remain alert on how the person is handling activities that may be unsafe. They also need to make sure that neighbors and relatives know about the problem and are alert, so that if they see something suspicious, they can call the caregiver immediately.
Some examples of areas to remain alert about are given below.
If the person with dementia drives, check regularly to make sure the person still drives safely. Confusion about location is common in dementia. Persons with dementia may keep driving in circles. Or they may reach some very distant place and not know where they are. They may also cause accidents. Accidents can happen because of missed traffic signals, confusion, poor responses, and so on. If the person was used to driving around independently, it can be difficult to stop them from driving. Persons with dementia may not believe or remember that they are no longer safe drivers. In early dementia, when the person can appreciate logic, one technique that works is saying the car insurance has lapsed or the driving license has expired. But these techniques do not work if the person forgets that these documents are 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. Many families in India use chauffeurs so that the car can be used for many family members through the day. Getting a driver may be a useful way to stop the dementia person from driving. It also ensures that the person can be taken for outings safely when needed.
Another area that requires alertness is smoking. Persons with dementia who smoke may set something on fire by mistake. They may not remember to extinguish cigarettes. Telling them does to smoke will not work. Smoking is an addiction and they will find some way to smoke, often by borrowing or stealing cigarettes. De-addiction techniques can be tried, but such techniques may be difficult for someone with dementia. The family can consider smoke detectors and fire alarms, depending on their assessment of the risk.
Remain alert on personal hygiene, medications, food and water. Dementia patients may stop their medicines and an existing health problem may worsen. They may not be eating enough food or drinking enough fluids. Stay alert on their food and water intake and nutrition. They may not be regular in their bath and cleaning up. Problems in these may be more difficult to note if the person with dementia lives independently, which is less likely in India. But even when in the same house, they may be neglecting some self-care areas. Family members have to remain alert.
Remain alert on the mistakes in activities that can be dangerous. Cooking is one such example. Going for walks and then getting confused about the way back home is another. There may be others. See how the dementia person spends the day to decide which activities you must remain observant about. While caregivers may not need to be present all the time, there is need for enough checks and safeguards for activities where mistakes could be dangerous.
Early stage care can be planned and done effectively if the diagnosis is available. Without a diagnosis, the family may not realize that the problems are because of a medical problem and that they need more information and planning to support the person. Unfortunately, in India, diagnosis in early stage is not common. Symptoms are mistaken to be old age problems, stubbornness, personality changes, etc., and doctors are not approached. Or doctors may not give a correct diagnosis. Hopefully as awareness increases, more patients will get diagnosed early and care can also be planned better.
Persons with dementia can play a very active role in decisions around their dementia at the early stage, if they and the society around them understand and accept dementia. Even if the diagnosed person do not understand all the possible problems of dementia, they can participate and take decisions if they accept that they have symptoms like memory loss and that these may get worse.
Mid-stage dementia is often most stressful for caregivers. The dementia persons, too, are often distressed because they forget they have dementia, but they do not understand many things happening around them. They keep facing more problems and put themselves at risk because of changed behavior.
Understand that changed and risky behaviors are more common in mid-stage. Safety is a very important part of care. Persons who are still able to understand their dementia diagnosis and problems can try to explain their problems to the family members. They can try to trust and cooperate with the caregivers when they can. They can try to enjoy whatever activities they can still enjoy. This may not always be possible for them, because dementia creates too many problems.
Caregivers need to appreciate the difficulties of persons with dementia. Some persons may be able to cooperate and may be aware of their situation and risks. But many other persons with dementia will not be able to do so. They forget that they have dementia and so they do not understand why they are having problems. They may get very upset about their lack of control. Risky behavior is much higher. They may wander. They get disoriented and confused and agitated. Changed behaviors are common, and some are harmful to the dementia person and others. The persons with dementia are still mobile and more difficult to handle. 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. Also, they may have other medical problems, but may not tell others about them so these medical problems remain untreated. Caregivers have to consider all these things while seeing how to plan and give care for mid-stage dementia persons.
Caregivers have to set up for mid-stage care and manage daily care. This includes making suitable changes at home and helping dementia persons with their daily activities and also keeping them safe.
Major changes may be needed in the home. Reality orientation tools may no longer work. The persons with dementia are mobile and can harm themselves. You must see which aspects of home setting can cause problems. Use creative solutions to keep the home safe and friendly for the person with dementia. Consider changes to reduce the chance of wandering. The person may need clothes that are easier to wear. Choices in the house may need to be reduced, and clutter removed. Observe what they find difficult or where they seem to be more at risk. Make adjustments accordingly. If hiring an attendant, adjust the home to give the attendant enough space, while also taking care of safety.
Use suitable ways to talk to the person with dementia, help the person, and handle changed behavior. Interactions have to be adjusted to the person’s needs and abilities. Care-related skills are very important now. You must know how to talk to and understand persons with dementia, how to help them, and how to handle changed behavior that seems harmful. If you have not learned these skills yet, you need to do so now. Changed behavior is very common in mid-stage dementia, and some of it may be harmful for the person and others.
Plan and maintain a suitable daily routine. A good daily routine gives the person with dementia a predictable way to spend the day. This makes life easier for them. Most persons with dementia feel much better if such a routine is used. A good routine has necessary daily tasks and also includes some meaningful and enjoyable tasks the person can do. It includes sufficient exercise, because exercise improves health and immunity and reduces restlessness. It should not be tiring, and it should not be boring.
You need to create a daily routine based on the abilities, likes, and dislikes of the person with dementia. As the person’s abilities will keep changing, this daily routine also needs to keep changing.
The family has to ensure care is available throughout the day if needed. By the time persons reach mid-stage dementia, they usually cannot be left alone. Even if they don’t need direct help, they may be at risk. A caregiver needs to be available nearby to prevent harm. This can be a problem because you may not be able to go out even for groceries or withdrawing money from an ATM unless someone else can stay with the person. Care planning includes ensuring that someone is available for supporting the person all the time. It could be a family member, a hired attendant, a volunteer or friend. Or you could use some support service like day care or respite care. They are not easily available in India.
Ongoing review is required because dementia keeps getting worse. This review is needed for all aspects.
Review how the person with dementia handles tasks and personal hygiene, etc. Keep adjusting support accordingly. Abilities will reduce as dementia gets worse. This affects the help persons with dementia need, and the support systems to change or improve. Review the medical aspects. Observe to see which tasks the person finds more difficult and what the additional risks are, and make changes. For example, is the person finding walking more difficult, do you need to add grab rails?
Review the medical situation. Existing medical problems of the dementia patient may have gone worse. Aids for vision and hearing may no longer be working well, and this may add to the person’s confusion. There may be new medical problems. There may also be side-effects of the medicines. Persons with dementia are usually unable to tell about their health problems, so be very careful. The person should stay under the supervision of a doctor who understands dementia and can also advise on other problems the person may face. You may need to decide on optional surgeries. For example, you may decide whether the person’s cataract should be operated now if you and the doctor feel the person will not be able to handle the surgery later. Also, stay alert about the various vaccines they need to take, as building immunity against infectious diseases is very important.
Review whether major re-planning is needed because of decline. Change may keep happening gradually and you may not realize that the status has declined so much that you need major changes. This could be hiring an attendant, or using two attendants instead of one. Dementia may be getting worse and reaching the advanced stage when dependence is much heavier. Persons with dementia sometimes get worse after an infection or other illness or a fall and may end up becoming bedridden. Or you may find that care at home is becoming very difficult and may need to start looking for a suitable respite care. So, as a regular review, you need to see how severe the decline is, and plan. For example, you need to understand what late-stage care will require, so that you are ready for it.
Caregivers should understand the common problems faced in care and get help to reduce them. Mid-stage care takes a heavy toll on caregivers, stressing them and tiring them completely. It requires major changes in their lives. By knowing the problems caregivers usually face, you can plan what you can do to reduce them or handle them better.
Caregiving can tire you physically. Persons with dementia need at least some help for most tasks. You have to make sure all tasks are done, and may need to guide the person or help them. For example, they 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. You need to be ready for doing or supervising/ helping with a lot of physical support. Ask a physio-therapist how you can help the person with dementia without harming your own back or getting too tired.
Caregiving can be difficult emotionally, too. Persons in mid-stage dementia often show difficult behavior. Outsiders often misunderstand the situation, or believe the dementia person’s complaints. Often outsiders are critical of the care, and suspect neglect. Hurtful comments are common. You have to be ready to face and handle difficult behavior. You also have to be emotionally ready to cope with unfair criticism, or reduction in friends.
Caregiving often affects job and finances of the caregiver. This includes changes needed to remain available to the person with dementia, and may require switching to a more flexible job or giving up work. It is also common for family income to reduce because of the expenses on care and loss of earning when some family members have to stop working to give care.
India does not have schemes to pay for the medicines and care of dementia patients, but you can check if subsidized medicines are available. Some income tax deduction for medical expenses incurred is available under section 80DDB. The income tax site has more information. Tax consultants can give more information. Note that only some types of doctors are authorized to give the required certificate.
Things you can consider for such typical problems include:
- Learn and apply caregiving tips and techniques. Dementia care can be simpler if you understand dementia and its impact better and learn more effective ways to talk to and help someone with dementia. Learn the caregiving skills using books, videos, training classes; it is well worth the effort. For physical work, ask physiotherapists how to help the person without tiring yourself.
- Look at all possible sources of support. Share the work and costs with family members. Get help from friends and others for errands or giving you company or emotional support, whatever they can help you with. Join support groups (online or in-person). Use counseling services if you feel stressed. To reduce workload, think of using attendants, and other dementia support and services.
- Plan for self-care. There are many small things you can plan and do for yourself to reduce your stress and remain in better health. These are discussed in a separate section on this page.
- Try to get some good, fulfilling moments during caregiving. The care work may seem less tiring if you can get at least some happy moments while doing the work. This is possible if you add some fun activities and relaxed times with the person with dementia in the daily routine and reduce your expectations about what the person can do.
By this stage, the dementia person is dependent for all activities. The person is unable to explain things or understand others well, and has poor body coordination. Incontinence (urinary and bowel) is common. Late-stage dementia persons 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 the persons cannot tell when they are unwell. Care for late-stage dementia needs very different type of planning and also knowledge of home nursing.
In India, families typically take care of persons with dementia at home, even at this stage. Care for late stage is an extensive topic, and requires adapting the home for such care as well as learning several additional skills, including home nursing. It is also emotionally draining as the caregivers can see the decline and the end is more visible.
Planning for care should also include precautions required to keep the person safe from serious infections and related complications, as was seen during COVID, and ensuring that care remains suitable in any constraints posed by such situations. The precautions and adjustments required may need frequent review, and the implementation will depend on the stage of the person’s dementia.
Precautions at home are required on an ongoing basis to protect seniors from serious infections. There may be advice that they stay at home and use suitable precautions like masks, social distancing and hand washing. This is very important because serious infections are more problematic for seniors with dementia, especially where the disease is very infectious and can be spread even by persons who don’t have symptoms. Caregiver alertness is required continuously.
Persons in early stages of dementia may be able to understand about infection risk, but may not remember to take required precautions and may need to be reminded/ assisted for these.
When care starts including helping in daily activities, caregivers have to be cautious that they do not infect the person and also act reassuring as the person may find these changes odd and disorienting.
Medical care may be particularly challenging in an environment where families need to balance between the requirement to visit a doctor and the risk of visiting a medical facility. Telemedicine is helpful, but has its limitations. Late stage care can be particularly challenging as it involves handling multiple medical problems and requires more healthcare services and tough decisions.
The following detailed page , which discusses home care during COVID, may also give an idea of care in similar challenges: Dementia Home Care during COVID – Infection Risk, Vaccination, Care Approach.
Some persons are diagnosed with dementia when they are less than 65 years of age. This is called younger onset dementia, or young onset dementia. (Another term in use is “early onset dementia” but this is generally avoided because some people use the term for cases where the diagnosis is done when he person is in the early stage of dementia, regardless of the age of person at the time of diagnosis, and so the term may confuse.) A person with younger onset dementia may be in the 40s and 50s, or even younger. Most such persons have Alzheimer’s Disease or fronto-temporal dementia (FTD). The World Health Organization estimates that around 6-9% dementia cases are younger onset cases.
Care for younger onset persons is usually handled by the spouse, 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 persons with dementia are retired and frail, and that such persons do not have many responsibilities. But younger persons with dementia are leading active lives, doing work, and handling many responsibilities. When they start facing dementia problems, they and the family have to also see how to reduce the work the person was doing, or hand it over/ close it. Above in this page, the discussion has covered care areas based on the dementia stage. For younger onset persons , you also have to pay attention to some more things because the persons are young and active.
If you have to support someone with younger onset dementia, please see the page: Plan care for younger persons with dementia.
Caregivers are so busy helping the person with dementia that they often forget to take care of themselves. They keep working harder and harder and try to do all the work. Then the dementia gets worse and they are doing the work almost full time. They get physically, mentally, and emotionally tired. But they are not able to take breaks. They are confined to home. They get isolated from their friends and social circles. Because they are tired and overwhelmed, they don’t have the energy for the additional effort to take care of themselves. Persons around them may not know they need support. They may not know how to help.
As a caregiver, you must plan for self-care as early as possible, before you start getting tired and overwhelmed. Understand your role and how it will increase when the dementia gets worse. Think of what you have to set up for your self-care later. Planning for your own health and happiness is as important as planning care for the person with dementia. Tips on what you can do for this are discussed in detail in some other pages (links in the See also below).
Resources/ references from Dementia Care Notes and related sites.
Pages discussing some of the topics mentioned above:
- The broad stages of dementia are discussed on: Stages of dementia.
- For a better understanding of changed behavior seen in dementia: How dementia impacts behavior.
- Home adaptations help adjust the home for the changing abilities of the persons with dementia. The topic is discussed in detail on: Adapt the Home for dementia patients.
- Read the page Understand the caregiver’s role for a detailed discussion on the role and the areas to consider for self-care planning.
- Discussions on various caregiving skills:
- How to talk to patients and how to help them: Communication and how to help them: Activities of Daily Living.
- Understand and cope with changed behavior: Handling Behavior Challenges and Special tips for challenging behaviors: wandering, incontinence, repetitions, sundowning.
- Help patients feel better and more capable: Improve the patient’s quality of life
- To understand more about emotions and stress, and also get some tips on areas to consider for self-care, see: Caregiver emotions and stress.
- To understand how to coordinate with the family, get help, and use available services:
- For using trained attendants and other services and support: Using Trained Attendants for Dementia Home Care and Using various dementia/ home care services.
- For coordinating with the family, caring from a distance, and getting help from others: Coordinate caregiving between family members, How relatives/ friends/ colleagues can help, and Long-Distance Caregiving for Dementia Patients in India.
- Detailed on late stage care: Late-stage care.
- Special discussion for care of a younger onset dementia patient: Plan care for younger persons with dementia.
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.
Some additional external references and links based on the discussion above.
- A two-part Indian article discussing financial problems that are faced and things that can be considered to protect from them is available at Financial Planning For Dementia – Part 1 Opens in new window and Financial Planning For Dementia – Part 2 Opens in new window .
- For more on guardianship, check the Guardianship Act Opens in new window and a related link Opens in new window and some discussion of actual cases where famlies were given control under various legal provisions here Opens in new window and here Opens in new window and here Opens in new window and here Opens in new window.
- Understand more about possible confusing symptoms in the elderly and about emergencies. Two useful articles on these topics: 12 Confusing and Overlapping symptoms in the elderly Opens in new window and When do I need to call an ambulance Opens in new window.
- For the tax benefits available for dementia care under 80DDB, search the Income Tax India site Opens in new window or view more details for the act Opens in new window. Use links on the pages for the terms and any required forms.