The patient’s abilities change over the course of dementia, and the caregiver’s involvement and focus changes accordingly. While planning, caregivers need to assess which stage the patient is in, and adjust their support accordingly. (See Stages of dementia to know what these stages are)
Care for the person with dementia has to be continually adjusted as the dementia worsens
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.
On this page:
- 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
- See also…
Dementia typically extends across several years. The initial impact is low, sometimes difficult for others to detect, but the deterioration keeps increasing and the type and amount of help needed also keeps changing and increasing. While every patient’s progression is individual, a broad understanding of dementia progression is often done by looking at dementia as early stage dementia, mid stage dementia, and late/ advanced stage dementia (read a discussion on the stages here: Stages of dementia). As caregivers, we need to adjust our way of caregiving accordingly. We need to give more help as dementia progresses, and the activities we have to help in also change/ increase. It is also important to understand how our caregiving focus may also change over time.
Dr. Jane Tolman (School of Medicine, University of Tasmania) suggests that the goals of care be changed as dementia progresses. In her paper, Stages of dementia, she proposes the following:
- First stage: Work to ensure dignity and autonomy. The goal of care is maintaining independence and enjoyment of the person with dementia
- Second stage: Work to ensure safety, as decline in function/ insight and more changed and risky behaviour places patients at risk
- Third stage: Work to ensure comfort, dignity, and quality of life, including reassessing medications and treatment approaches
It is important to remember that any division of dementia or care into “stages” is not a rigid division, but merely a way to be able to understand and plan care. Patients vary very widely in terms of how fast their dementia progresses and how their functionality and dependence changes. Families and patients also vary widely in how they interpret concepts like dignity, autonomy, safety, care, quality of life, and so on. However, an overall view can help families decide how to care for the person as dementia worsens.
Decline of ability is relatively mild in this stage. While patients can still do most of their activities, and function independently, they become more forgetful and begin to lose their ability to plan and to make decisions. They can see there is something wrong, and it can overwhelm them and make them lose initiative. Fortunately, medication is often helpful in reducing the impact of the memory loss.
How the patient copes with this phase depends partly on how well they and the society around them understand and accept dementia. In countries where awareness on dementia is high, people use this early dementia period to get in touch with their families and convey what they will want later, and to make arrangements for the future to the extent they can. Unfortunately, in India, it is not common to get diagnosed at this stage and awareness and acceptability of dementia is poor. Elders cover up their mistakes and memory loss scared they will be labeled as stupid or mad, and the children may not point out any problems assuming it to be old age, or fearing they will be shouted down as being disrespectful. As a result, we lose this window of opportunity to set a good foundation for future care. Hopefully as awareness increases, more patients will get diagnosed early and can be looked after better because of early diagnosis.
Patients can use this time to adjust their lives to this reality. They can readjust work-life, phase out work or business and make fewer commitments. If living alone, they can discuss relocating with/ near children or to assisted living facilities. Legal safeguards, such as power of attorney and living wills, can be executed before cognitive ability declines. It may be possible for them to explain to caregivers what sort of medical interventions and other arrangements they would want later.
Sometimes, patients are unable or unwilling to accept that they have dementia; it may be simpler for them to understand that they suffer from severe memory loss which will get worse.
Caregiver focus in early stages is to encourage the patient to remain independent and continue to do the tasks they need to do. To make the tasks simple and do-able, caregivers can observe how the patients do the tasks, note where the patients have difficulty, and make small changes in the house so that patients can remain independent.
Caregivers need to stay alert about risks. While patients should be encouraged to take care of their activities and their personal hygiene, caregivers have to remain alert and help when needed. Mistakes will happen. Despite all the patient may try, the abilities will decline, and the caregiver will need to step in when that happens. Caregivers must be particularly alert for neglect in personal hygiene, for missed meals and medications, and accidents.
It may not be necessary for the caregivers to be present all the time at this stage, but they should be checking up the patient very often, and have safeguards against accidents. It makes sense, even at this stage, to ensure that neighbours and relatives know of the problem and are alert, too. If a neighbour 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 likereminder notes and can still read large clocks and calenders. Caregivers can start adjusting the house to make it suitable for the patients. Containers and drawers can be labelled using both words and pictures. Signs may be placed on doors. Simple charts can help the patient remember the steps to perform an activity. Medicine boxes can be provided to help patients manage their medication. If patients make mistakes such as mixing up shoes, leave only one or two pairs visible. Reducing clutter can reduce patient confusion. (see also: Adapt the Home for dementia patients)
Caregivers can plan and start equipping themselves for caregiving. They have 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, and initiate changes where appropriate
- understanding enough about the patient’s medical state
- understanding about other areas of the patient’s life that will need to be supported/ taken over, such as financial and tax decisions
- setting up systems for handling investments and tax and finances, such as switching over to joint (either/ or) accounts, getting power of attorney, etc.
- getting the patient under the care of a doctor who will be able to advise all through the following years, when the patient will not be able to communicate or even know what the problem is
- understanding more of the patient’s past, and of likes and dislikes. Even though the caregiver may have known the patient for years, the caregiver may not have been alert enough to notice these, or may not remember them
- collect and organize material that could be helpful later for jogging the patient’s memories, such as photographs, old valued prizes, and other memorabilia
- begin involvement in various areas of the patient’s life so as to get the patient adjusted to the fact that the caregiver is now going to be more involved
- let relatives, friends, and colleagues know about the situation so that they do not start make fun of the patient every time he/ she forgets something or makes a mistake. Uninformed relatives/ friends often give unsolicited advice to the patients, telling them to show more “will power” or be more “active” as they do not understand the nature of problems the patient is facing.
Caregivers must remain alert about deterioration. Dementia is progressive, so the patient’s abilities will be declining over time. Caregivers must be very alert on whether the patient is competently handling activities that could be unsafe, like driving or traveling alone, and keep modifying the environment and care to adjust for decline.
Driving is one activity that needs very regular review, as continuing to drive with reduced functionality could be a risk for the patient (getting lost) and others (accidents caused by missed traffic signals and so on). The following discussion may help caregivers evaluate when the patient should no longer be driving: Old age and driving and Dementia and Driving.
Being prepared for emergencies is a very important part of caregiving. A helpful list for such preparation is available here: Preventing and being prepared for emergencies.
Mid-stage dementia is often most stressful for caregivers because the patients are still mobile and often tend to do things that can harm themselves. Patients are prone to wandering. They get disoriented and confused and agitated. By this time, they know something is wrong, but they cannot fully grasp what is going on, and get very upset about their lack of control. 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 behaviour can get hurtful and embarrassing.
To add to the problems, the patient may face medical problems, but not recognize them as medical problems, and these may therefore remain unattended.
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 caregivers may not realize that the patient’s agitation is because he/ she cannot hear or see clearly. Decisions on optional surgeries may need to be taken, keeping in mind that the patient’s dementia is only going to get worse. For example, caregivers may need to consult doctors to see 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 will need to make sure the patient is eating nutritious food, drinking enough liquids, and is doing enough exercise.They will need to check that the patient wears appropriately warm clothing and footwear.
Major changes may be needed in the home. This stage of dementia is tricky to handle because the patients are mobile and can harm themselves. Caregivers need to remain alert about what factors of the home environment are problematic, and come up with creative solutions to make the home safe and friendly for the patient.(see also: Adapt the Home for dementia patients)
Caregivers need to learn how to communicate with the patient, help the patient, and handle difficult behaviour. Often, our normal common sense is not enough because we assume that the patient is competent and means what they are saying or doing. We need to learn caregiving skills that help us adjust and tune our way of thinking and acting to suit the dementia patient’s mental and emotional situation.(see also: Handling Behavior Challenges)
Constant availability and alertness is essential. Typically, patients cannot be left alone and sometimes, even going out to shop or withdraw money from an ATM is not possible without leaving someone else with the patient. Even if the patient agrees to stay alone and promises not to do anything or go anywhere, the promise means nothing because the patient will forget.
If an attendant is being hired, the home needs to be adjusted to allow he attendant enough space, while also taking care of safety.
Providing care can be physically fatiguing. Patients need at least some help for almost every task. Caregivers need to be alert that all tasks are done. They need to guide the patients to start the tasks, and in some cases do the task for the patient. For example, the patient may not be able to take a bath alone–he/ she may forget to soap herself, or forget to rinse the soap, or to dry herself using a towel. As a lot of physical work is involved at this stage, caregivers may benefit from consulting a physio-therapist for the best way to handle the work without harming one’s own back or straining oneself too much.
A daily routine for the patient needs to be established. This balances a do-able set of tasks and relaxed, enjoyable tasks and gives the patient a predictable structure for the day. Activities must include sufficient exercise, as exercise can reduce general restlessness.
Ongoing review is required. With the deterioration continuing, caregivers need to constantly review the activities the patient does, and simplify them/ get aids for them/ help more with them. We need to also remain alert on whether more adjustments are needed in the house to match the patient’s needs and declining abilities. We need to keep seeing how caregiving has to be changed to cater to the new situation.
Caregivers often need to make major adjustments in their lives. To cope with this stage, caregivers need to make life changes to remain close to the patient all day, such as switching to a profession/ job that can be done from home or taking a sabbatical. Getting a full-time attendant, or using day care facility to be able to go out during the day may be considered. Caregivers trying to balance their family and other responsibilities while also handling the patient’s care will often need to use services like paid attendants (part-time or full-time), day care facilities, and respite care. These enable the caregivers to be able to handle chores and other commitments outside the house without compromising on the patient’s safety.
Caregivers may face financial challenges. Because of the constant attention the patient needs, and the adjustments the caregivers make for this (reducing work/ employing help), there is often a reduction in income and increase in expenses. Financial planning may be needed, and alternate sources of income may need to be identified. This is challenging because caregiving work itself takes up a lot of energy and time. Help from siblings and relatives may be needed. India has no scheme for assisting families for care of patients, but it may be worth checking whether subsidized medicines are available. Some income tax deduction for medical expenses incurred is available under section 80DDB if the family can get a medical certificate issued in the prescribed format by doctors who meet the criteria of the income tax section; an overview of this from the income tax site available at these links here, here, here, and here. Tax consultants should be able to advise on the applicability of this.
Several support systems are needed at this stage. Systems are needed to handle helping the patient in every activity, in having an environment that is suitable for the patient, and in supporting the patient for other problems that can occur. For example, caregivers may need to handle other medical problems of the patient, such as infections, and problems that are common in old age. Having access to doctors who do home visits and who understand the patient’s condition is very helpful.
Caregivers have to be ready for emotional challenges. Patients often exhibit challenging behaviour and catastrophic behaviour during this stage. Caregivers need to educate themselves on handling challenging behaviour and preventing catastrophic behaviour. Outsiders not involved in daily care often misunderstand the situation, or believe the patient who complains to them. They may be critical of the care, and suspect neglect. Hurtful comments are common. Caregivers also face isolation as their existing social circles are no longer accessible to them. All these are emotionally draining.
Caregivers need to take care of their own health and emotional state. Given the continual and stressful nature of care required, caregivers are often tired–physically, mentally, and emotionally. They may forget to look after their own health and well-being. They are also prone to caregiver stress and isolation. Support groups are very useful forums for sharing stories and tips, and getting a sense of community. It is also good if caregivers can pull in help from the family for the work, which gets exhausting. Short breaks and vacations can help recharge the caregivers. (See also: Caregiver emotions and stress)
Caregivers may find care more fulfilling if they and the patient share fulfilling activities. Often, caregivers are so busy coping with this phase that they do not consider activities that could make life more enjoyable for the patient. It seems difficult enough to handle the tasks and the challenging behaviours. However, by spending some effort in improving the patient’s quality of life, the caregivers may find the patient more peaceful and easier to handle. Besides, these activities may also provide the caregiver times to relax and be with the patient in ways that are fulfilling, and reduce the overall stress.
By this stage, the patient is dependent on the caregiver for all activities. Coordination is very poor, and communication is non-existent. Patients are often incontinent. Their walk is extremely unsteady. With time, they become bed-ridden.
The nature of caregiving at this stage is very different from mid-stage dementia care. By now, even outsiders can see that the patient is suffering from a disease, and the criticism seen in the earlier stages typically gets replaced by some element of sympathy. However, the care required now involves elements of home nursing.
Caregivers need to employ help and also be trained in home nursing. A bed-ridden patient needs to be tended with great care. Every activity needs skill–bathing the patient, cleaning, changing sheets, feeding. There may be transfers required from bed to a chair/ wheelchair. Patients who can still walk somewhat may need to be taken for exercise. Bed-ridden patients will need range-of-motion exercise in bed. Typically, some home help is required to assist in this care. Caregivers also need t0 learn ways to handle this heavy work without damaging themselves. It is helpful to consult a physiotherapist to learn the best way to support patients.
Systems and support for home care are essential. It is necessary to be in touch with services that enable home care for such patients, such as home nursing services that help with services like catheterization, IV drips, and nebulizing.
Caregivers need to remain alert on medical problems. As the patient declines, they face multiple medical challenges. They may already be patients of problems like diabetes and hypertension, and other such problems, and all of these need to be handled along with the dementia. Patients are unable to communicate their pain or problems, and caregivers need to be extra observant to notice whether the patient is also facing some other medical problem.
This stage may be long-drawn and involve witnessing a slow, painful decline. The patient, now bed-ridden and unable to harm himself/ herself, is in a protected environment and safe from injury and infection, but being bed-ridden also causes decline. Bedsores may happen despite use of airbeds and frequently turning the patient. Chest infections and urinary infections are more common. With frailty and immobility, organs start giving way. Swallowing becomes problematic, and patients may choke. Problems are also created because of other health conditions, such as hypertension, diabetes, and cancer. Even so, the patient may continue in a stable condition for months, with the decline being very slow. Nights spent hearing the patient groan can be very heart-wrenching.
End-of-life decisions need to be taken. Late stage dementia marks the final decline of the patient and caregivers need to educate themselves about the sort of problems end-of-life care involves. Family consultations will be needed, to be clear how to handle end-of-life decisions, such as whether to opt for aggressive treatment. Decisions may need to be taken on whether to give strong antibiotics and injections, whether to hospitalize, to do tube feeding. For a dementia patient who does not understand why he/ she is being subjected to such treatment, the situation could be traumatic, and caregivers need to be clear on how they perceive the trade-off, because the patient is not in a position to decide. Families can consult palliative care specialists to see how best to keep the patient comfortable (these specialists should have an understanding of how palliative care concepts apply for persons with dementia). It is advisable for families to discuss these options before the emergency arises, because under the emergency rush, clear discussions and decisions are very difficult to coordinate.
Caregivers have to handle their grief at the impending loss. They must be prepared to face the long goodbye of seeing a patient fade away. Counseling may be needed.
Most dementia care discussions assume that care is being planned for elderly patients, persons who have retired and where the focus is on helping them lead fulfilling lives and supporting them through the activities necessary for daily life.
Dementia is not just a problem that the elderly get. The WHO estimates that around 6-9% of dementia cases are young onset (also called younger onset and early onset) where the symptoms appeared in persons less than 65 years of age. There are many persons who get dementia when ther are in their 40s and 50s, or even younger. Alzheimer’s and fronto-temporal dementia are common forms of dementia found in young onset cases. Caregivers in such cases are typically the spouse, but could also be siblings, young children (still studying or just at the start of their career), relatives, and even elderly parents. In addition to the care plan aspects discussed above, there are special areas to consider in such situations.
Persons with young onset dementia are usually in the prime of their lives. They are typically leading active, productive lives when dementia strikes. They may be at the peak of their career, as professionals holding important positions, or businessmen or contractors with obligations and commitments. They could be accountants, doctors, surgeons, lawyers. They are often tax payers, owning property, paying off loans, and may even be the sole earners of their family. They may be playing active roles in their building society or their temple association or sports clubs. They could also be home makers who take care of children and family obligations so that the spouse is able to concentrate on his/ her career. These are persons who have no intention of retiring or withdrawing from an active life, and their spouse, children, relatives, peers, colleagues and bosses have no idea that these people could be suffering from dementia.
Once dementia strikes, every role will suffer. Patients will no longer be able to teach or perform operations or meet their professional deadlines. Home makers may no longer to able to help children with homework or manage house and family obligations. Their impaired judgment could cause them to invest unwisely, or donate off all the money. Disinhibition caused by some dementias may place them in situations embarrassing to their spouses and children and parents. Young children may mourn the loss of a parent who no longer recognizes them. Parents may be in shock that their child has dementia. Spouses and siblings have to cope with watching a peer deteriorate at an age when he/ she was most productive and active.
Planning needs to include phasing out of work/ business. Some countries have systems to support diagnosed patients so that they can continue work in redefined roles after the diagnosis, or avail various disability/ compassion allowances. However, such systems are not found in many other countries. Typically, employers would not make any concessions for such employees, and would treat any mistakes/ losses that occur because of dementia as poor peformance. The employee with dementia may be considered liable for major losses or even face persecution. Most employers would dismiss a person with dementia because they do not want to risk losses or offending customers or set a precedent for poor performance. If the patient was running a business, business associates/ partners would typically not continue the business association and prefer to buy out the person’s share instead. Planning must therefore include checking available benefits/ job flexibility options with employers, but typically the only recourse is that the patient leaves the job after availing all possible benefits, or opts for early retirement. Share in business may need to be closed/ sold off.
Financial matters/ investments/ other statutory matters may need to be taken over in phases. It is common for patients to make mistakes in investments, not understand the value of money, or get cheated out of property. People around may realize that this person is gullible and cheat them by using smooth talk, and making them sign on power of attorney documents or property sale documents, or making them hand over jewelry or cash. Cases where patients are induced to give away large amounts of money to strangers/ so-called charity organizations are also common. Business partners may also try to cheat the person out of his/ her share. This is more critical in young onset cases, because the patient is still active and has direct control of investments and property. Family caregivers need to guard against cheating. They need to get involved in matters like investments, property, tax, etc. They need to locate important papers and find out the status of finances and commitments. Such involvement and take-over in legal and financial areas can get tricky if patients do not understand or cooperate (this is also discussed above in the section on caring for early-stage dementia).It can be helpful to get the support of persons whom the patient trusts, and who understand the gravity of the situation.
Social circles may be lost As most peers of the patient are in the prime of the careers, they are often too busy to remain connected with the patient and family after the patient is no longer working with them. The chances of the family suddenly getting cut off from all social circles are very high. Friends who want to stay connected may lack the ability to understand and empathize with the situation, and not have enough time to interact. Many may not believe the problem, or feel very uncomfortable seeing a peer facing such a diagnosis, and therefore avoid the family completely. Caregivers may need to put in extra effort if they want at least some important, close friends to stay connected; this may mean explaining the situation openly and asking for support and help.
Caregivers may not know enough about important aspects of the patient’s life. As the patient was independent and active, the person now thrust into a caregiver role may not have been involved in the patient’s professional or social life. They may not even know who the patient’s friends are, how to contact them, or what are the various commitments the patient has made socially and in the circles of friends and relatives. This can cause misunderstandings and unpleasantness. It may be necessary to confide about the situation to some trusted friends and ask for help to handle such matters and avoid illwill.
Parents/siblings/ other relatives of the patient may be in denial or may blame the patient’s spouse. It is very difficult for the parents to accept that their child has dementia. They may deny that there is any problem, and cut off contact. They may blame the spouse (very common if it is a son who gets dementia and a daughter-in-law can be blamed). They may even disinherit the child. They may be scared that the siblings of the child who has developed dementia will carry a stigma and not get married, and may insist in hiding the diagnosis. Other relatives, like siblings, may also be in denial or blame mode. All this means that one major avenue of support is cut off, and the persons handling the care are further isolated. Again, caregivers may need to ensure that the rest of the family accepts the diagnosis. Using authoritative literature and asking counselors/ experts to talk to them may help. Ensuring that the rest of the family accepts the diagnosis is additional effort but it may make it easier to get their support later.
Young children of the patient may be hit particularly badly. They may be angry/ embarrassed/ in denial, and may withdraw/ cut off. They may feel very insecure or very resentful about the situation. Often, the patient’s children are in a critical phase of life, studying or just starting their career. An emotional disturbance ar this stage could have a major impact on their future. Given the poor awareness of dementia in society, chances are high that the peers of the children are unable/ unwilling to support them. The caregiver spouse has to juggle supporting the children along with supporting the spouse with dementia. Being open about the problem and sharing it within the family often helps. Asking the school/ college counselors to help may also be useful, but not many educational institutes have counselors who understand dementia well enough, so the spouse caregiver will also have to educate the counselor.
Finances are often a major problem If the patient was the sole earner, the family is left without income, and others who may have started earning are caught up in trying to look after the patient. Even if the patient was not the sole earner, once the patient needs care, the family’s earning members have to now handle the caregiving in addition to earning, and often that gets difficult. As the dementia has occured at an age when savings were yet to be built and expenses are high, there is often no base of savings to use up. All this makes planning of finances and alternate sources of income a critical part of planning. It also means that the family will need to pull in all help it can from relatives and so staying on good terms with relatives becomes critical. Unfortunately, often relatives may hesitate to help because they expect this help to be needed for too many years, and they too are at the prime of their lives. Caregivers usually need to find ways to earn money while also caring for the patient, using whatever skills they have and can use in the time available. This is often a very stressful aspect of caregiving in young onset cases, especially in societies where there are no health care plans or social security nets for such families.
The physical work involved is more tediousAs the patients are younger, they are stronger and more active. Helping them and handling them requires more physical strength and stamina. This is particularly true when the patient is male and the caregiver is the spouse.
Available facilities and support services are usually geared for elders, not young onset patients. For example, it is assumed that persons with dementia who need to be placed in respite will be put in an old age home. But these patients are younger and do not fit into an old age home atmosphere. Also, many young onset cases suffer from FTD, which means their memory is not much affected and the main problems are more on the behavior front, and available facilities are not geared for such care.
Emotional impact on caregiver is very high While most people expect that some degree of caring would be needed for the elderly, they are not emotionally ready for caring for someone in his/ her 40s or 50s. The emotional support systems and counseling available is poor, and the caregivers are also facing challenges on multiple fronts. Spouse caregivers may find it very difficult to cope with losing out on so many things in the prime of their lives. If the caregivers are parents, it is physically difficult and emotionally traumatic for them to cope with their ageing problems while also tending to an adult child with dementia. Caregivers may also be the children, who are still in their teens or in their early twenties or thirties; they may have to shoulder this responsibility at an age when their peers are focusing on building their future. Seeking counseling (if available) or some other solace (through spiritual activities, creative work, other stress-relievers) or social/ friends circles is very important for this situation.
[Read this interview of a daughter thrust in the role of a caregiver: Ekta Hattangady: Fifteen years old when her mother was diagnosed with Alzheimer’s]
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 his availability to support his wife, the primary caregiver, and shares tips on various aspects to be considered by the family of a dementia patient: Mistakes made, lessons learnt, tips shared .
- Families may 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
- In this US News article, a financial analyst provides suggestions on how seniors can plan for the compromised decision-making that results from dementia. This article is aimed at American readers and may not be fully applicable to us in India. Please note that a lot of caution is needed while making financial decisions. However, reading the article may help people generate ideas on what can be done by them for their specific context. Read the article here: 8 Alzheimer’s Financial Protection Tips
- Being prepared for emergencies is a very important part of caregiving. A helpful list for such preparation is available here: Preventing and being prepared for emergencies.