Caregiver burnout is a real condition. The Maslach Burnout Inventory, a tool created to assess occupational burnout, describes caregiver burnout as ‘a psychological syndrome characterized by emotional exhaustion, depersonalization, cynicism, negativity, and decreased feelings of personal accomplishment.’ And while caregivers in general endure stress, dementia caregivers pip the non-dementia caregivers in this regard many times over. The reason for that is the nature of the illness itself.
Dementia is a condition characterised by the loss of cognitive functioning of a person to such an extent that it affects their daily life and activities. Taking care of an individual with this condition requires constant monitoring and care, which in most cases, is done by a loved one. A WHO study reports that 80% of dementia patients are looked after by their family members, who give about 6 to 8 hours of care in the initial stages; this figure almost doubles in the last months of the patient’s journey.
Spending extended hours looking after someone who is completely dependent on you can have a significant impact on the physical and emotional well-being of the caregiver. A factsheet jointly published by the Alzheimer’s Association and the Alzheimer’s Impact Movement, in March 2020, reports that nearly 60 percent of dementia caregivers rate their emotional stress levels as high or very high. That said, along with family support, there are ways and practices that you, as a caregiver, can follow to cushion this intensely emotional and stressful journey.
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Care giving in the initial stage of dementia
In the initial stages of dementia, your loved one might not need as much physical care as they would need emotional support. As a caregiver, your role at this time would be to help them accept their condition and make lifestyle changes to improve their physical condition and also stay emotionally strong and independent.
- Accept the diagnosis
Accepting that your loved one is going through dementia can be as difficult for the caregiver as it is for the patient. At this time, it is important to give yourself and the patient time to process the diagnosis and grieve the loss. Many conflicting emotions of anger, disbelief, grief, and fear are bound to engulf you. However, do not let denial make its way to you, as early intervention can go a long way in alleviating the condition. - Update your know-how of dementia
There is a wealth of online resources and books to help you understand more about this disease. Start by talking to the concerned doctor about the patient’s prognosis and seek help from communities dealing with dementia patients.
Dr. Anjali Chhabria, founder of Mindtemple Institute of Behavioral Sciences, Mumbai, says, “Knowledge can empower you and help you feel more confident in your care giving role. Support groups such as Caregiver Saathi and Alzheimer and Related Disorders Society of India (ARDSI) can help you understand dementia. They not only give insights about the disease but also work as a space where individuals can share their experiences and receive emotional support.” “There are groups on Whatsapp that are available round the clock. They share advice that sometimes even doctors are not aware of. Also, many renowned hospitals have communities that could prove to be beneficial to resolve any doubts or worries,” recommends Dr. Nivedita Singh, founder of Co-create Change, New Delhi. - Slow down the progression of the disease
Dementia is an incurable disease. You can, however, help slow down its progression with lifestyle changes that involve keeping the patient active and independent. Regular exercise, proper nutrition, sound sleep and social interactions can go a long way in slowing down the deterioration process. “Implement visual aids, such as calendars, signs, or labels, to help your loved one with dementia navigate their daily routine. Visual cues can provide structure and reduce confusion or frustration,” recommends Dr. Chhabria.
Take care not to make them dependent on you for their personal and daily activities. Encourage them to perform basic tasks like changing clothes, eating food and walking within the house premises. Remember, your love and care is important in helping them maintain their independence for as long as possible.
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Care giving in the middle stage of dementia
As the disease progresses, you will notice that your loved one often slips into nothingness, will have more extensive memory loss, and might deteriorate physically too. At this time, your care giving requirements will increase. - Communicate effectively
You must have easy and effective communication with the patient. Dr. Chhabria says, “Using clear and simple language, maintaining eye contact, and being patient when understanding their needs or preferences is essential. Also, it’s important to avoid arguing or correcting a person with dementia. Memory loss and confusion are common symptoms of the condition, and trying to convince them otherwise can lead to frustration and agitation. Instead, focus on providing reassurance, empathy and redirecting their attention to a more positive or calming topic.” Non-verbal cues like a gentle touch, facial expressions and body language can also convey your intentions effectively. - Create a safe home environment
Over time, you may notice physical changes in the patient like difficulty in walking and vision impairment. Dr. Chhabria says, “Create a safe and clutter-free environment for your loved one. Minimize distractions, keep essential items in accessible places and use safety measures such as handrails or grab bars to prevent accidents.” - Seek help
Taking care of a dementia patient can be overwhelming both physically and emotionally. Dr. Singh strongly urges, “Don’t shy away from asking for help. Reach out to family members and friends when needed. Have a schedule wherein you factor in “me time” for yourself. Take frequent breaks in the day where you pursue your interests and take ample rest.” Caregivers of dementia patients go through tremendous mental fatigue and emotional turmoil, which may often lead to burnout. It is advisable to join a support group where you can share your feelings and learn from the experiences of others.
Care giving in the last stage of dementia
As dementia reaches its last stage, the patient will require care 24x7. They may be unable to perform tasks independently and might be vulnerable to infections too. They might also have mood swings and hallucinations. As a caregiver, you will have to combat these new challenges and deal with mixed emotions. You may, at the same time, experience relief that your loved one’s sufferings are coming to a close and guilt for not being able to save them. It’s important to give yourself time to adapt, grieve and accept the inevitable. - Hire a trained professional
It is advisable to hire trained help to look after the medical and other needs of the patient. These professionals are trained to look after dementia patients and can be beneficial in an emergency. You can also opt for palliative care where your loved one is provided the best medical care in a friendly environment. - Connect through non-verbal gestures
In the last months of dementia, the patient may not be able to express their feelings verbally, but can still connect through their senses. So, be around them and hold them close. Play their favourite music or see old pictures together. These connections still hold strong for them and can be an emotional booster for you and your loved one. - Seek professional help
While your loved one is deteriorating in their condition, so are you. Many unresolved emotions need to be addressed at this stage. It is advisable to seek professional help. Dr. Singh counsels dementia caregivers who come to her feeling overwhelmed and angry. “They feel hopeless, sad, worthless and suffer extreme exhaustion and fatigue. These are the emotional and physical symptoms of depression amongst dementia caregivers. Recognize them and seek therapy where you can articulate your emotions. It can be extremely cathartic,” she says.
Shweta Dravid is a self confessed explorer who writes on travel, health, wellness, mindfulness and life truths.
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