Home care for a dementia patient is very different from living with and supporting normal elders. Patients forget things and lose their ability to do things, they can no longer understand their surroundings or say what they are thinking or even ask for or accept help. As care extends over years, family members struggle to support the patient while also balancing other work and responsibilities. Dementia home care aims at:
Caregivers need to take care of a person with dementia while also continuing to fulfill their other roles and responsibilities
What caregivers can do: Understand how dementia will impact the patient and other members of the family. Look at the other responsibilities to be handled in addition to the care of the dementia patient. Decide the techniques they need to learn for the caregiving. Plan the care and see how it will change as dementia progresses. Understand what sort of adjustments will need to be made. Decide how to balance the caregiving with other responsibilities. Try to enjoy what is possible, get fulfillment from the caregiving, and stay stress-free.
- A safe and empowering environment for the dementia patient, where the patient receives help that matches his/ her abilities and needs, and lives in an affectionate setting that balances routine and stimulation suitable for his/ her changing abilities
- A low-stress life for family members, where they achieve balance between providing care to the dementia patient and their other needs and responsibilities
To put together various reference materials available and understand how to proceed with this responsibility, caregivers need a framework to use. The suggested approach below focuses on an emotional alignment to the situation, getting information and acquiring skills, and then providing care and fine-tuning it while retaining emotional equanimity. Here are the elements proposed:
- Understand dementia well enough in terms of how it impacts the patient’s emotions and behaviour
- Get equipped for caregiving and set up the care environment
- Provide care and fine-tune it continually
- Get help from people around us, from paid services, and from various systems
- Remain emotionally comfortable and reasonably stress-free
- Summing it up…
Understand dementia well enough in terms of how it impacts the patient’s emotions and behaviour
Often, merely reading about dementia does not align us sufficiently to its impact on patient emotions and behaviour. When the patient acts in ways we do not like, we are unable to remember that this could have been caused by dementia. The caregiver’s emotional alignment to how dementia affects the patient often marks a turning point in effective dementia care.
The basics are clear enough: dementia is the name given to a group of symptoms that affect a person’s ability to remember things and to perform actions, progressively deteriorating till the person is bedridden fully dependent on others for even the simplest task. It could be caused by diseases that affect the person’s brain; Alzheimer’s is one of the disease that can cause it, but there are many other diseases that could cause this group of symptoms called “dementia:. Some forms of dementia are reversible, while others are not. Read these links for an overview of dementia and its progression: (What is dementia, Causes of dementia, Diagnosis and treatment, Stages of dementia)
As caregivers, we have to understand how dementia affects the patient’s emotions and behaviour. A starting point for this is available on this page:How dementia impacts behaviour.
Though we have read that “memory loss”, “problems in understanding”, and “inability to learn new things” are expected problem areas in dementia, we often fail to correlate these concepts with patient behaviour. We keep expecting patients to understand and remember things, and to show the same degree of eagerness and interest in new things. Take, for example, things that bewilder and hurt caregivers:
- I had told Appa not to go out and he agreed, but the moment I turned back, he opened the door and walked out
- Why doesn’t Amma understand! I have explained this to her hundreds of times!
- I bought him a new mobile but he doesn’t use it.
- Appa remembers his childhood so well, how can he say he doesn’t remember our Mumbai trip
- Amma lied to the neighbour and said I didn’t get her sari ironed
Yet all these are only to be expected if we remember that patients are already struggling to act normal and are facing genuine problems.
Imagine…
- You are in a room and you have forgotten why you are there and who the people around you are. You want to go home, and these people say you are already at home. But this is not your home.
- You know the person in front of you is a close relative, but you just cannot remember who she is
- Frightened that you are alone at home, you call up friends. Your daughter gets angry and says she had told you she was going out for just ten minutes. You just don’t remember any such thing. She must be lying.
- You just can’t understand how the new mobile works, but your son has replaced the old mobile
- Wasn’t the kitchen to the left of the bedroom? What is this new machine here?
As family members, we (unintentionally) often place expectations on dementia patients that could be stressful. We subject them to lengthy explanations and ask complicated questions, expect them to socialize and cope with new situations, want them to take decisions, and hold them responsible for saying things they don’t remember saying. When they make mistakes, get frustrated, or snap, we are puzzled and feel they did not try hard enough. We don’t think about how their problems would be adding to emotional insecurity or a need to control, and see their actions as stubbornness or lack of cooperation. We argue with them and persuade them and “set boundaries” for them, which they (not surprisingly) don’t seem to understand, and even if they agree, they claim they forget.
When reading books, we understand that memories may have gaps which patients fill up by imagining things (without realizing), but when our patient spins inconsistent tales of the past, we get alarmed or think they are lying.
“Thought experiments” may help family caregivers imagine what dementia could be for the patient. They may deepen our understanding so that we can correlate patient behaviour with possible dementia-related causes while it is happening. It will remove unrealistic expectations that are unfair to us and to the patient. Read the page How dementia impacts behaviour for an understanding.
Understanding of dementia’s impact grows with experience, but it is worthwhile spending time on this aspect, as this can make a critical difference to the quality of care and the emotional state of the patient and caregivers.
Get equipped for caregiving and set up the care environment
Given that dementia care extends over a long period and often requires many changes, some effort to equip oneself for caregiving can save a lot of heartburn and mistakes. Here are the key elements:
- Understand the home caregiver’s role
- Planning care across the years
- Creating safe environment for the dementia patient
- Learning essential caregiving skills
- Learning the importance of “activities”
Understanding the home caregiver’s role: Caregiving for dementia occupies a considerable amount of time and energy, and affects all spheres of the caregiver’s life. Click here for the caregiver role.
Planning care across the years: As dementia care extends over the years, and the care requirements change with dementia progression, caregivers need to understand the stages of dementia and understand what they will need to do at various stages. This enables them to prepare and make adjustments in time in their lives, as well as ensure coordination across the family. Read more about: stages of dementia, planning care, and coordination with family members. If involved in long-distance care, also see this link.
Creating a safe environment for the patient: If the patients are provided a home where they can feel safe moving around and using things, they feel enabled and competent, and are less stressed. Mishaps are less likely. Adjustments required to the home change as the patient’s dementia progresses. Click here for adjusting the home.
Learning essential caregiving skills: Because patients find it difficult to understand others or explain what they want, and because they begin finding normal activities difficult, caregivers need to learn how to talk to them and help them. Links for essential caregiving skills are here: Communication, Helping with Activities of Daily Living, and Handling Challenging Behaviors. Discussions on some specific challenging behaviours are available here: Special tips for wandering, incontinence, repetitions, sundowning. When patients reach late-stage dementia, caregivers need additional skills and special setting up of the home, as described here:Late stage dementia care.
Learning the importance of activities: There are plenty of ways the quality of life of dementia patients can be improved through simple conversations, pleasurable activities, and reminiscences. These activities create a happy and relaxed atmosphere and reduce stress for both patient and caregivers. Read more here: Improve quality of life.
Caregiving, with continual fine-tuning
The process of actual caregiving involves continually assessing the patient’s current state and adjusting the care approach accordingly. The idea s to provide an environment where the patients are able to use whatever skills and competence they have in a safe, stress-free environment, while supporting them in areas where they face problems. This is done by adjusting the home according to the patient’s needs (to the extent a family can manage), and establishing a suitable routine which includes required daily living tasks, pleasurable activities, and relaxation. The patient’s responses are used to fine-tune the balance between helping the patient and stimulating him/ her.
Most patients respond very positively to having a routine, as it reduces the stress of uncertainty and change. While some degree of variety may be interesting, it is also stressful to persons who already find normal tasks and conversation difficult, so it is necessary to keep changes to a level that patients can cope with and enjoy.
Family caregivers sometimes find it difficult to accept that the abilities of patients seem to vary across days, and that on the whole, in spite of the best of efforts of caregivers, the patient’s abilities decline over time. They have to remember that dementia is progressive by nature, though the rate and type of progression varies widely. All we can do is keep assessing the state and tuning our support accordingly. It is helpful to remind ourselves of how care changes across stages, and how we must adjust the home and our care accordingly.
An important thing to remember is to keep the entire family involved: Coordinate caregiving between family members
Also, as the care component increases, it is necessary to review available help (see next section).
Getting help from people around us, from paid services, and from various systems
Families often underestimate their need of help, and do not know who can help and how.
For example, in the initial years, they may not involve the rest of the family, and this becomes a problem later because others do not appreciate the problems being faced or know how to help. (Read: Coordinate caregiving between family member)
Family caregivers also do not know how to ask people around them for help.
We all have some friends, relatives, neighbours, colleagues and ex-colleagues. Often, as dementia awareness is low, these persons may not realize that help is needed, and could even be critical. Some of them would like to help if they knew we needed it.
Caregivers need to understand that it is extremely difficult to handle all the dementia care work without any help. But as the caregiving work increases, family caregivers need help in multiple areas of their lives. Using help reduces workload and tension, and gives caregivers time to relax. It is therefore recommended that family caregivers keep others involved and keep the channels open to ask for and receive help. All we need to do is remember the characteristics of the potential helper (knowledge about dementia, time and energy, willingness to learn, what sort of things do they like to do) and decide what they would be comfortable helping us with. If someone cannot help them with the patient, the person may still be able to do some necessary bank work or shopping.
Read more here: How relatives/ friends/ colleagues can help
There are also multiple types of services available that can be useful to a caregiver. Some are services that allow a home-bound caregiver manage things more easily: pharmacies that deliver medicines at home, pathology labs that get home samples picked up, grocery shops that do home-delivery, online services for banks and shops. Other services are geared specifically for care of the dementia patient. Still others can help caregivers through support groups and counselling. Click here: Using various dementia/ home care services. Trained attendants are a particularly important element of dementia home care for most families. Read more here: Using trained attendants for dementia home care.
Remaining emotionally comfortable and reasonably stress-free
Dementia caregiving is considered as the most stressful type of caregiving, and caregivers therefore need to guard against breakdowns. We must not let ourselves get fatigued to a burn-out point, and must make sure we nurture ourselves as well as have enough positive experiences to tide us over on bad days. Often, overwhelmed caregivers do not realize that caregiving can have several fulfilling moments if we let ourselves go with the flow.
There are many reasons caregivers get stressed. Every sphere of their lives is affected by the caregiving: careers, social life, family life, finances, and leisure. On top of that, they have to see the patient fade away and become increasingly helpless in spite of what they do. Earlier methods of de-stressing are no longer available; long vacations may not be possible, outings with friends are difficult to coordinate, social circles have diminished. It is therefore necessary to find new ways to care for oneself and to nurture oneself. Read Caregiver emotions and stress
An important thing to remember is that there are a lot of things that we can still do and enjoy.
We can pamper ourselves in small ways that work for us, several times a day, whether by listening to a funny song or reading a book or taking a walk or talking to a friend. We may not be able to see movies in a theatre, but we can see them at home using a DVD player. We may not be able to call people home, but maybe we can meet them at the cafe around the corner. If we give ourselves enough such breaks, our fatigue and desperation does not build up.
Caregiving can also be fulfilling if we accept the realities of dementia and think of our role as a useful and productive one. After all, we do pack a lot of management and creativity into it. Seeing the value of what we do, feeling good about it, is an attitude we can cultivate. Even if others do not value our role, we can value it ourselves.
Times with the patient can also be fulfilling. The patient may have forgotten many things, but is still capable of happy emotions. We can spend relaxed time with the patients, just sitting with them and watching children play in the park, or listening to old music together, or looking at old albums or playing board games. It does not matter if they don’t remember the rules of the games; if we let go of our expectations, we can still have fun.(Read: Improve the patient’s quality of life)
The essence is to enjoy what is possible while providing care, and to flow with it. By sharing happy times with the patients, we will find ourselves more willing to do things for them, and they are also more relaxed with us. Caregivers who are always using every interaction with the patient to get something done or achieve some “improvement” may find this change of pace very relaxing. Caring together for a dementia patient can even bond the family together, as they share both work and fun times involved in the care. This set of happy memories will help us cope on difficult days.
Summing it up
Dementia care stretches over years. Effective dementia home care requires understanding and skill and making adjustments, but to achieve it with minimal stress, and even convert it to a fulfilling activity, requires an emotional alignment to what dementia is, valuing one’s role as a caregiver, and accepting the flow of things. We can find our balance once we do what is necessary but drop expectations and frustration. It will be tiring at times, and also overwhelming, but it will also give us happy times we will remember, and the satisfaction that we did the best we could for a person who needed it.
