Tag Archives: challenging behaviour

Indian movies depicting dementia

While many Indian movies show seniors and problems of ageing, recently some movies have also started showing persons with dementia. This is often one of the few exposures for Indian viewers to dementia. Many viewers therefore tend to assume that what they see in the movie as a character’s dementia behavior and problems is medically correct. They may also assume that all dementia situations are like the one they saw. But movies are not documentaries, and they are not made to provide the audience a correct and comprehensive understanding of all types of dementia and care situations.

This page lists Indian movies where a main or important character has dementia (either duly diagnosed as dementia, or vaguely mentioned as possible dementia). A brief overview is provided for each movie. This can help people understand which aspects of dementia and care the movie includes, and how reliable this movie depiction is. …

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My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver

Nadira (name changed) is a highly-reputed consultant who has executed sensitive and critical assignments with several well-known multi-national companies. She is now taking a break from professional work and residing in India, caring for her 80+ mother who suffers from Alzheimer’s. In the interview below, Nadira shares how the progression of her mother’s illness reflected in behavior changes, how the family took time registering that these changes were different compared to earlier, more regular difficult behavior displayed by her mother, and how she has now educated herself on the condition and developed the patience, love, and empathy required to care for her mother.

Please share some background information related to your family and situation.

I was the first person in my extended family to leave home at 17 years of age – to study abroad and shape my future. I am the youngest of three children; my sister and brother are much older than me. It always seemed to me like there was a whole generation missing between my parents and I. Because of this, my relationship with them was always fraught with confrontations and rows, especially in my late teens and early twenties.

The relationship with my mother in particular was pretty fractious, probably because we both have very similar personalities; we are both headstrong individuals with quick tempers. Our blow-ups were frequent, harsh and at times even violent, because she seemed to be possessive and always wanted to have her own way.

Looking back now, I realize that my mother started showing symptoms of dementia around the mid-1990s. Without any knowledge of what he was dealing with, my father took care of my mother until 2001, at which stage my parents moved in with my older sister.

After I left home for studies, contact with my parents was restricted to short annual visits. My contact with my siblings who were married and lived different parts of the world, was even less. My parents lived in India by themselves because my siblings and I were settled abroad. Looking back now, I realize that my mother started showing symptoms of dementia around the mid-1990s

Read the full post here : My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver

Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse

Sheila is a registered nurse who has worked in Aged Care assisted living facilities (long-term stay homes for elders). She is currently working in an acute hospital where caring for patients with dementia is an everyday occurrence. She has interacted extensively with several dementia patients as part of her professional work. In this interview, she uses her professional experiences to share tips that can be used by family caregivers looking after persons with dementia in a home setting.

As someone who has been working with patients with dementia, you must have often encountered upset and agitated patients. Can you describe a couple of such experiences and how you and your colleagues resolved them?

In my experience, when persons with dementia are admitted to a hospital for an acute medical condition, it is not uncommon for them to occasionally become agitated. This also happens in “aged care” facilities, where patients have moved in for long-term assisted living care. Sometimes this agitation is related to simple things like the patient not being able to find the toilet. Sometimes they know that they are not at their usual place, and hence have a desire to leave.

..a woman with dementia may be living with her husband, but her mind is back in another time/in another house/ with her mum and dad. Persons with dementia don’t have the ability to reason that they are not children any more, and they do not know the difference between past and present, because the area in the brain that handles higher functioning has been damaged and lost

Also, such agitation can happen even to patients living at home, and such a desire to “go home” (even though they are already at home) may be related to their mind being in a different chronological time in their history. For example, a woman with dementia may be living with her husband, but her mind is back in another time/in another house/ with her mum and dad.

Read the full post here : Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse

Father thought I wanted to kill him: a daughter talks of her father’s dementia

Nayantara (name changed) is in her forties, and lives with her parents because her father has dementia and her mother needs help in his care. Unfortunately, though her father has been showing strange behavior for years, and has been diagnosed with dementia, family members (his relatives and his wife) refuse to accept the diagnosis and insist that he is normal. When Nayantara tries to explain the problem, they accuse her of exaggerating, and sometimes even doubt her motives. They also accuse her of not taking care of her father, though they are not really willing to help.

In this interview, Nayantara describes the situation and talks of the strange ways in which her father acts, and how she copes with the stress.

Could you give us some background information first?

Father comes from a poor family. He has a physical deformity because of which his parents neglected him and were unwilling to pay for his education. Being a brilliant student, he funded his studies by taking tuitions for younger children. His childhood problems, however, left him an insecure person, prone to anger.

All those years we just thought he was a difficult man to live with.

Father’s strange behavior is something my sister and I have seen for many years, such as episodes of disproportionate anger and walking out of the house. My mother always considered them normal, and as they increased, we did not really think there was a problem and did not consult a doctor about them. All those years we just thought he was a difficult man to live with.

When I finally approached a psychiatrist because of some more problems we faced, the psychiatrist conducted tests on Father and gave the diagnosis of dementia. He told me that the dementia had probably been growing over the years and may have been the reason for the troublesome behavior earlier.

The diagnosis happened about three years ago, and Father has been getting worse in spite of the best care we are able to give.

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His condition affected every sphere of my life: a son talks of his father’s Alzheimer’s

Varun (name changed) is a writer whose father has dementia (Alzheimer’s). For a few years, Varun helped his mother care for his father, but later, his mother decided to move with the father to their hometown because she felt he would be more comfortable there, and care would be simpler with relatives and friends around them. Below, Varun shares his experiences and thoughts about caregiving.

“Varun”, who gave this interview anonymously in November 2010, continued to ponder and process his caregiver experiences and, increasingly began sharing them with friends and caregivers. He is now open about this aspect of his life, and wishes to give his real name: “Varun” is “Eshwar Sundaresan.” We have retained the interview below as originally published, and have also added, at the bottom of this interview, the link to a blog post he made in September 2013, where he shares his personal growth derived from his experiences with his father’s dementia.

For the period your father was living with you, how did his condition affect your work, leisure, and social life? What sort of adjustments did you need to make to balance your other roles/ aspirations with this responsibility?

His condition affected every sphere of my life.

My leisure time and social life dipped to zero.

I don many roles in my professional life – writer, journalist, consultant, and others– and I began staying at home more than usual so that I could handle any emergency that presented itself. I inevitably lost some revenue, but I felt that my mother needed my presence in those first three years. On two occasions, I went overseas on important assignments and I was forever anxious about the home front. My mother handled him extremely well in my absence. During these overseas stints, I also had the guilty realisation that I was enjoying my father’s absence. By not seeing him and my mother suffer on a daily basis, I felt… liberated. I admonished myself for being a bad son, but I couldn’t ignore this overwhelming sense of relief flooding through me.

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Care in a dementia day care centre: a social worker explains

Jincy Shiju is a social worker at Dementia Day Care Centre, Bangalore (a service run by Nightingales Medical Trust). Currently, the centre services six dementia patients for day-time care on weekdays. The activities of ARDSI Bangalore Chapter are also carried out through the Centre.

What steps do you follow to admit a patient for the day care facility?

When a client’s relatives approach us for day care facilities, we first ask them to get the client be assessed by our doctor. During this assessment, our doctor checks the client’s current status and identifies which areas to focus on during rehabilitation and care. We next gather information about the client from the client’s family, using our “client social profile” format, and we sit with the family to get clarifications and additional data about the client.

At the end of this information-gathering, and before we take in the client for actual care, we are therefore well informed about the client’s personal and social history. For example, we know:

  • Client’s personal history, such as preferred name, school/ education, occupation, cities lived in, languages known, family details (such as spouse, children, grandchildren and others), friends/ neighbours, pets
  • Special memories and anecdotes
  • Social involvement, such as whether the client likes to socialize, social activities enjoyed, etc.
  • Emotional habits, such as how the client expresses emotions such as joy, sorrow, does the client like to be touched/ hugged, how the client expresses frustration
  • Religious beliefs and habits
  • Behavior challenges
  • Routine the client is used to

Read the full post here : Care in a dementia day care centre: a social worker explains

Voices: Caregiving in the news

This page provides links to some online news reports, articles, and personal essays that include dementia caregiver stories from India. They provide an insight into real-life experiences of dementia situations here, the challenges faced, what families do, problems due to lack of information and poor awareness in society, and the use or limitations of various support mechanisms, etc. Articles have been selected to provide a cross-section of recent caregiver experiences and are arranged by their main theme for the convenience of the reader. Themes include: Wandering, Early onset dementia, Elderly caregivers, Decisions and experiences around using care homes, day cares, and attendants, “Remote” caregivers, arrangements, and guilt, Diverse care situations, symptoms, challenges, introspection, comments, and Personal blogs that span the entire dementia experience.

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Special tips for challenging behaviors: wandering, incontinence, repetitions, sundowning

Changed behaviors are common in dementia, and some of these are worrying because they can harm the patient or others. Some common difficult behaviors seen are wandering, incontinence, repetitions, and sundowning.

What caregivers can do: Understand typical triggers for such behaviors. Observe the patient for possible causes. Evaluate special tips suggested on this page, available in books, and in support groups. Decide on a suitable approach and try out changes. Keep observing what happens and adjust the approach as needed.

A patient’s behavior depends on the state of the patient’s dementia, on what is happening, on the patient’s needs, surroundings, and other factors. You can use changed behavior to understand the patient’s situation, abilities, and needs. Once you understand what is causing the behavior, you can find creative ways to cope. The page, Handling Behavior Challenges, discussed a general approach for changed behavior. This page discusses some specific worrying behaviors seen in many patients.

  • Wandering.
  • Incontinence.
  • Repetitive behavior.
  • Sleeplessness and Sundowning.
  • Links for some other unusual and challenging behaviors.
  • See also….

Read the full post here : Special tips for challenging behaviors: wandering, incontinence, repetitions, sundowning

Handling Behavior Challenges

Almost everyone with dementia shows some changes in behavior. On some days, patients get agitated. Or they wander or get abusive or withdraw or do things that can harm them or others.

What caregivers can do:  Understand that these episodes are the patient’s response to a situation. Look for possible causes and reduce them. Satisfy any physical or emotional needs. Check if patient is in pain or unwell. Check if your response or expectations are contributing to the behavior. Chck if the physical surroundings are unfriendly. Consider tools like validation, distraction, and fiblets to bring the situation under control. Keep yourself and patient safe.

  • There are many changes in behavior. Some may cause worry.
  • Ensure that you are calm and positive>.
  • The approach to changed behavior.
  • A non-drug approach.
    • Consider: Is the behavior a “behavior of concern”?.
    • Use ABC analysis to understand patient behavior.
    • Prevent the trigger, or modify the patient’s response. This reduces possible harm.
  • Some tools and tips.
  • Medicines for changed behavior.
  • See also….

Read the full post here : Handling Behavior Challenges

How dementia impacts behavior

In the initial stages, family and friends often don’t realize how much dementia affects the patient. They may see that the patient seems confused or is slower at normal tasks. But they don’t think these changes could be related to dementia. They may even get irritated or sad because they think the patient is stubborn or lazy. This reaction makes patients feel worse and affects their behavior. The patient’s physical surroundings may not be suitable, which adds to their problems.

Persons with dementia have reduced cognitive abilities. This may affect their memory. It affects their ability to do things. It may affect their emotions and reactions. This page discusses how dementia may affect patient behavior. The discussion is not “exhaustive”, but may help caregivers think about what to expect from patients and how to help them. They can then also think of home changes that would reduce the difficulties that patients face and will keep patients more independent and safe. They can reduce the possibility of patients harming themselves and others because of “changed behavior.”

  • The brain gets damaged in dementia.
  • How dementia affects the ability to do things and may cause unusual behavior.
  • How dementia affects the emotional state of the patient.
  • >Reduced cognitive abilities combine with environment and interactions to further affect behavior.
  • Glimpses of how patients experience dementia.
  • What caregivers can remember about dementia behavior.
  • Terminology around dementia behavior.
  • See Also….

Read the full post here : How dementia impacts behavior