This short article is meant for family members, friends, and colleagues who want to someone with dementia but don't know what they should do. The article provides a simple and helpful introduction on how to approach the overwhelming role of a dementia caregiver. Suitable to understand various aspects of dementia care. More detailed discussions on how to plan for and cope with dementia home care can be seen at: http://dementiacarenotes.in/caregivers/

1. Caring for someone with dementia
by Swapna Kishore
[This short article was written on request for a souvenir. I am sharing it here because many family caregivers said
they found it a simple and helpful introduction on how to approach the overwhelming role of a dementia caregiver]
Family members, friends, and colleagues often want to support persons with dementia, but are
unsure how to proceed. Below is a brief overview of dementia caregiving.
The first step is to understand the difficulties dementia patients face.
Most people don't appreciate how much dementia affects the patient because they think it is
normal for elders to have reduced brain functionality and memory loss. They think dementia
problems are similar to the way most elders misplace keys or get slower at calculations.
The fact is, because of the cognitive decline in dementia, patients find it difficult to do even
normal, simple activities. Amma skips lunch because she doesn't remember how to heat the meal
her daughter left for her. Grandfather gets cheated of his lifetime savings because he no longer
understands financial transactions. Papa gets lost because he can't remember where he lives.
Grandmother has no idea how to open the bathroom tap. But family members assume such
behaviour is laziness or carelessness because they don't realise these problems are caused by
dementia. When Amma withdraws, they say she is 'giving up' and any frustration or agitation is
considered meanness.
However, once people understand how dementia affects the patient, they can find ways to help
the patients.
Realistic expectations are essential for effective caregiving.
Families often hope treatment will make patients recover completely from dementia, and do not
understand the limitations of medicines. They also think that if patients try harder, they will
become normal.
Such unrealistic expectations create problems.
For example, family members insist that patients should remember things correctly and work
faster. They 'correct' mistakes, criticise, get angry, or show disappointment. This confuses and
distresses patients who are facing genuine problems and already trying their best. They become
slower or may get agitated, which, in turn, upsets family members even more. This unhappy
circle ends only when families accept the dementia reality and adjust their care approach based
on realistic expectations.
Caregivers can look for ways to improve patient safety and fulfilment.
Once caregivers appreciate the realities of dementia, they are able to find suitable caregiving
approaches.

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©2014-2015, Swapna Kishore. All rights reserved.
Consider problems of communicating with the patient. Dementia patients may forget where they
are and not even recognise family members. They get distracted easily. If caregivers understand
these problems, they'll know that typical communication tips can help: face the patient while
talking, use eye-to-eye contact, use simple words and short sentences, speak clearly and calmly,
and avoid complicated questions. If names confuse patients, point out objects. These and other
suggestions can vastly improve communication.
Or consider ways to change the home. Signs pointing to the bathroom can help confused
patients. Patients may feel safer walking around if clutter and hanging wires are removed. Grab
bars may help. Suitable home adaptations make it easier for patients to do their tasks.
Better dementia understanding can also explain sudden changes, like the patient becoming
inactive one day. If caregivers know that patients often can't explain when they are unwell, they
may notice the patient's fever or sprained ankle.
Basically, patient behaviour provides clues that can be used to find solutions.
For dementia patients, every day is full of difficult tasks, and a predictable daily routine reduces
stress. But like everyone, they like fun and want to feel useful. Caregivers who add suitable games
and simple chores to the patient's daily routine often find that patients are more cheerful and
willing to do things.
Care has to be person-centric.
Though there are similarities across patients, dementia affects individuals differently in terms of
type and severity of damage in the brain, and how this worsens over time. Care must be adjusted
according to the patient's changing abilities, personality, past history, health, likes and dislikes,
skills, interests, family, social environment, etc.
Dementia care involves heavy responsibility and hard work. Also, it is heart-breaking to see
someone decline. Caregivers get exhausted, make mistakes, and may feel guilty, resentful, or
depressed. Yet they do experience joy, especially when focusing on what patients can still do.
Those fulfilling moments give caregivers the energy to do the work and accept the inevitable
decline.
[More detailed information and discussions on dementia and related care can be found at my site: Dementia Care
Notes (http://dementiacarenotes.in) (Hindi version at Dementia Hindi (http://dementiahindi.com)). A related
Youtube channel is at http://www.youtube.com/user/dementiacarenotes The sites and videos focus on home care
for persons with dementia, assuming the Indian context.]