Caring for someone with dementia

In November last year, a friend asked me to write a 700 word article on dementia caregiving for a souvenir. Though I’ve written extensively about dementia and related caregiving, the imposed word-limit forced me to weigh each sentence, each word. What should I include? What to exclude? While I didn’t manage to say all I wanted, I realized that a one-pager overview of a vast topic can be a relief after the rambling posts I typically make on this blog. So here’s the article, unchanged (I confess that I was sorely tempted to expand it, but I desisted🙂 ). Note that the article was written assuming very poor dementia awareness, as the intended readers were based in India.


Caring for someone with dementia

by Swapna Kishore

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.

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.


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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

8 Responses to Caring for someone with dementia

  1. shikha aleya says:

    Thank you Swapna – this is a simple and very reader friendly orientation piece.

  2. Abhishek says:

    Dementia has taken a toll on to our family.. My,mother has Alzheimer’s for almost 8 years now, and now i feel guilt as to why i didn’t understand what she was goin through during the onset of dementia, why did i chide on her for burning the food, why did i get angry when she used to come naked from bathroom , and a lot many things.

    Its a difficult disease to cope with and especially for caregivers understanding of disease and patient change in behaviour , orientation, mood swings etc is very pertinent and more than everything acceptance is something which is more than anything.

    Sapna you are doing a wonderful job of writing about dementia and yes i relate to it.

    THANK YOU

  3. Pasha sheik says:

    Thank you swapna madam,
    I am writing this comment bcoz ur suggestion can help me,recently my grand mother got fracture to her right hip and right wrist.we admitted her in hospital and she had a surgery that was OK but after the surgery she was discharged from hospital and we bring her to our homehafterfter 4 days of discharge she is not speaking the sentences correctly and not identifying persons and her pronunciation is getting wrong day by day.as we noticed the changes we are suggested that,this condition is bcoz of depression and the condition is dementia so what would we do know..

    • Pasha, often persons coming home after a stay in the hospital are disoriented because of the hospital stay. But you should discuss this with your doctor anyway. If they check and say this is depression, they may give medicines that will help.

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