Alzheimer’s is one of the most common types of dementia characterised by progressive degeneration of neuro-cognitive abilities. According to WHO, around 55 million people in the world suffer from dementia, and over 60% of them live in low and middle-income countries.
A report by the Alzheimer's and Related Disorders Society of India (ARDSI) states that the number of Indians with Alzheimer's is projected to reach 7.6 million by 2030. However, the nation is still not equipped enough to handle the specialised care needs of patients suffering from Alzheimer's.
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Alzheimer's disease is a complicated health condition that requires a multi-pronged approach not just by doctors but also by caregivers. Since a person with dementia and Alzheimer's might become agitated, for them even simple tasks become difficult. Thus caregiving must effectively address these challenges. If you are responsible for caring for an Alzheimer's patient, here are some things you should be doing.
1. Streamline the daily routine
Helping patients with Alzheimer's manage their routine activities is one of the most valuable support caregivers can provide. Ensuring a simple and uncomplicated routine further ensures compliance and successful implementation.
2. Orient them about time
Have a calendar/wall clock in their room and mark each passing date on the calendar to keep them oriented about time. Arrange loved ones’ photographs in the room, preferably arranged chronologically. Show them family photo albums.
3. Keep fixed surroundings
Try to keep their surroundings fixed. Too many new things should not be introduced at a time.
4. Create a safe environment
Caregivers can ensure safety through constant monitoring of the patient’s neuro-cognitive health parameters and provide continuous surveillance and emergency support. Put written reminders/ pictorial demonstrations in the washroom, bathroom, kitchen etc. for washing hands/ flushing toilets/ to remind them about where the groceries are. Keep reminders for medications, and use pill organisers.
5. Encourage socialising and going outdoors
Caregivers can ensure a life of dignity for the patients by providing access to community and companionship. Ensure that they spend more time outdoors by going for a walk or the park, etc., making them talk to their loved ones and family.
6. Watch out for infections
Maintain hygiene and keep an eye out for infections which can act as a trigger, such as urinary tract infections.
7. Beware of sundowning
Many of these patients have “sundowning”, which means confusion/dementia worsening in dark. Here is what you should be doing to prevent this
1. Maintain a routine for bedtime, waking, meals etc.
2. Limit daytime napping
3. Increase sunlight exposure in the daytime by going outdoors
4. Tea/coffee should be taken in the morning hours only
5. Evening tasks should be calming; listening to music, for instance
6. Avoid too much screen time, especially in the evening
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8. Respect their choices and decisions
Involve the patient in decision-making in the early stages of dementia to make sure that their legal and health care wishes are respected.
9. Be reliable
Ensure that the patient can rely on the caregiver for support. It is important for the caregiver to provide a consistent, secure environment and build trust with the patient.
10. Provide independence
Ensuring the patient has a sense of independence and is in control of some, if not all, aspects of his/her life. Motivate the patient to make small decisions like choosing clothes, activities, etc. Ask them to keep reminders in their smartphone/ notebook regarding things to do in a day.
11. Be a good listener
Demonstrating understanding and patience when talking with the patient is of critical importance. An active listener who makes the patient feel secure, loved, and valued can help reduce the behavioural problems associated with the disease to a great extent.
12. Come up with simple caregiving solutions
Alzheimer's disease is characterised by marked forgetfulness and impairment in daily activities. So even a simple solution like helping maintain an activity chart and supervising their medication can drastically reduce the patient's burden.
13. Guide the conversation
Patients may find it difficult to sustain a conversation due to memory impairments. Giving subtle hints, not asking unnecessary questions, and avoiding confrontations will help keep the flow of dialogue going. Avoid questions which will challenge the short-term memory of your loved one. e.g. What did we have for breakfast?
14. Avoid criticising
All patients with Alzheimer's disease have good and bad days. Demonstrating patience and avoiding criticism can make the transition smoother.
15. Join support groups
Joining support groups can help manage stress and anxiety, so find one that is nearest and participate in their meetings. Remember that caregiver burden is associated with increased stress and anxiety levels. So if you feel the need, reach out to your doctor or a mental health professional nearby.
(Inputs by Dr Kedar Tilwe, Consultant Psychiatrist, Fortis Hospital Mulund & Hiranandani Hospital, Vashi; Rajit Mehta, MD & CEO, Antara Senior Care and Dr Charulata Sankhla, Consultant Neuro physician, PD Hinduja Hospital & MRC, Mahim)