The caregiver’s role
As dementia patients decline cognitively and become increasingly dependent, the role of the caregiver is critical in their care. While caregiving is required whenever a person is ill/ dependent, caregiving for a dementia patient is considered more stressful than caregiving for patients suffering from other disease. This is further compounded because as dementia progresses, the patients also suffer from other diseases, and caregiving involves handling challenges posed by a combination of disease.
- The special challenge of caregiving for dementia
- Typical caregivers, and the type of effort involved
- Preparing for a caregiving role
The special challenge of caregiving for dementia:
Caregiving for a dementia patient is very different from the caregivingwill for patients with other chronic conditions. This is why:
- In most other medical conditions, patients need assistance, but are aware of their problem and are able to communicate and also make choices. Not so for a dementia patient, where the cognitive decline alters behavior and also makes the patient incapable of understanding his/ her health condition and unable to make decisions.
- In most medical conditions, patients understand that treatment is needed, and cooperate, even if they find it difficult. Even if they occasionally lapse, they do understand that the caregiver is doing what is required, and is helping them. Dementia patients, unable to understand their problem, often view caregivers as intruders. They indulge in self-harming behavior (as they cannot understand what harms them), and get aggressive/ abusive or withdrawn towards the caregiver. Often, they sabotage treatment, such as by throwing away medication and pretending they had taken it. Care for them is sometimes like swimming upstream (against their will).
- Sometimes the patients are misled by others regarding the caregiver intentions, and get paranoid, accusing the caregivers of stealing their money/ property, or even poisoning them. Sometimes, even without external instigators, patients are extremely suspicious of caregivers, and accuse them/ inform visitors about such alleged injustice/ persecution. This is embarrassing and hurtful. Worse, outsiders, unaware of the nature of dementia, may believe and act upon such accusations.
- Part of the fulfillment of caring is because the patient knows what we are doing, and appreciates it (even if grudgingly). Dementia patients, over time, no longer recognize the caregiver. This can get very heart-wrenching.
- Most caregivers find it very difficult to see the patient fade away as a person. Caregivers face a daily heart-break as they see their loved-one lose her personality, or become a (apparently) different person. On occasion, the caregiver may have had unresolved issues with the patient being cared for, due to real or perceived injustices the patient did in the past. In such cases, the extreme hard work caregiving involves sometimes seems unfair and unbearable, and resentment grows.
- In most diseases, caregiving is for a short period till the patient recovers. Or, if the patient is at the end-life stage, the caregiving may last some months. In dementia, the progression sometimes stretches for years. It is, as they say, a very long goodbye.
- Looking after a dependent but uncooperative (because he/ she does not understand) patient is often physically extremely tiring. It has been likened to a 36-hour job.
- Because patients can harm themselves, and are dependent, they cannot be left alone. That gets overwhelming for caregivers who end up having no life outside their caregiving responsibilities. Social life comes to a standstill, isolating the caregiver further. As people who have not done similar caregiving are unable to understand the sheer volume of work and stress, caregivers get very little support.
- Unfortunately, families often do not stay united in this task, and siblings get distanced over divergent opinions about what type of care is optimal.
A good overview of how dementia caregiving is different from other caregiving (such as, in terms of activities and time required and the impact on caregivers) is available in the 2010 Alzheimer’s Disease Facts and Figures.
Typical caregivers, and the type of effort involved
Normally, caregivers for dementia patients are family members: sons and daughters, son-in-law, daughter-in-law, siblings, spouse. Sometimes, caregivers are friends. There are also paid caregivers, and caregivers at institutions.
According to the 2010 Alzheimer’s Disease Facts and Figures, the number of dementia patients in the US in 2009, was 5.3 million. An estimated 10.9 million family members and friends provided unpaid care for a person with Alzheimer’s disease or another dementia. They provided an estimated 12.5 billion hours of care, an average of 21.9 hours of care per caregiver per week, or 1,139 hours of care per caregiver per year. The estimated economic value of the care provided by family and other unpaid caregivers was $144 billion.
In this section, my focus is on the family/ friend caregivers, because these caregivers are often thrust in the role of caring without preparation.
Preparing for the caregiving role.
People who end up becoming caregivers of dementia patients are usually people like you and me, people in various jobs and professions, with no clue about dementia or what caregiving involves for a patient with declining cognitive ability. Many of us had never envisaged we would end up in this role, and have no mental or emotional preparation for it. We don’t have a clue on how to handle the behavior problems a dementia patient poses.
In view of the long duration of caregiving required, and the extra challenges and heart-breaks it poses, if you are thrust into this role, you need to be prepared so that you can care for the patient in ways that are effective and low-stress for both the patient and for you. A caregiver who is reconciled to the role, well-informed and equipped, and ready to do what works, is more likely to remain cheerful, and the patient is also more likely to respond better to such care.
Dementia patients lose their cognitive abilities, but remain aware emotionally of their surroundings, and are quick to notice the emotions of the people around them. Patients will notice that the caregiver is irritated/ frustrated/ angry, even if he/ she is careful not to utter anything hurtful. They will not understand why the caregiver is experiencing negative emotions, and may end up getting angry ot feeling insecure and withdrawing in response. Dejection in a caregiver will be noticed, too.
It makes sense to understand that caregiving is going to be long-drawn and will require multiple skills. Treat it like a project, and plan for it. This is what I recommend:
- Learn about the disease, and how it affects the ability to understand and to intrdo things.
- Understand the extent to which medicines can (or cannot) help, and find a doctor you are comfortable with
- Learn about the stages of dementia progression, so that you understand what to expect over the years.
- Learn skills required for caregiving. This includes
- How to keep the patient independent as long as possible
- How handle challenging behavior
- How to assist the patient as he/ she becomes increasingly dependent for activities of daily living
- Home nursing and first aid skills
- Join communities where you can share experiences and tips
- Discuss with family to decide how you will handle caring, finances, etc.
- Readjust your priorities to balance the caregiving work with other responsibilities/ roles, keeping in mind that caregiving is likely to be long-drawn.
It is common for people to underestimate the work involved. This is especially so if you are living away from the patient and have so far mainly seen the patient for small stretches of time, because patients often seem normal enough on such occasions.
For every individual, the journey of caregiving is unique and personal, and everyone handles it differently. Becoming part of communities of caregivers will enable you to select elements that may work for you.
Bob deMarco, the caregiver behind the very successful site, Alzheimer’s Reading Room, shares his journey in his blog, along with tips and news and resources. He says,
When I finally learned that I was an Alzheimer’s caregiver; I realized I needed to define my role as a caregiver
and shares his “Metamorphosis of this Alzheimer’s Caregiver” as a two-part entry here and here.
Caregiving is overwhelming in the beginning, till you adjust and find your pace and balance. It may not seem possible in the beginning, but caregiving can also have some very beautiful moments, and if you plan and adjust to the role, you may find that caregiving adds a meaning to life in a dimension we do not usually notice in our busy lives. Taken with love and compassion, it may even bring together a family, and strengthen the values the children in the family inculcate.
On a personal note, I have been a caregiver for my mother since 1998. It has been a long, long time, and full of many problems and mistakes. But once I truly adjusted to it, caregiving has also had many fulfilling, tender moments where I connected to my mother in a way my busy life and out differences in personalities had not allowed before. Since 2009, I have been sharing some of my thoughts through my blog. While most of those entries are about my mistakes and lessons in caregiving (and successes, too), here is what I have written about learning for the caregiver role. And here are some (link 1, link 2, link 3) that describe my caregiving journey.