Tag Archives: respite care

City-wise/ Region-wise Dementia Care Information

This page has links to various city/ region-wise dementia resource pages currently available on the site, provided for the convenience of caregivers of patients of Alzheimer’s Disease and other forms of dementia.

It also includes some tips on how to locate resources in your city.

Read the full post here : City-wise/ Region-wise Dementia Care Information

Invisibility of caregivers leads to their isolation: a development consultant shares her key perceptions

Shikha Aleya is a writer, researcher and development consultant, and is involved in too many projects at any given time, including pet-sitting. Along with friends and colleagues, she is trying to create a community forum called Caregivers Link, to connect caregivers, resource people, and organizations together. As part of her work related to this, she has been collecting data to understand caregiver concerns and perceptions and needs better. >

Based on the data you have gathered so far, can you tell us how the caregiver role is perceived in India?

…informal family caregiving is not seen as a distinct role.

From the responses received and after talking to many caregivers, one key perception that emerges is that informal family caregiving is not seen as a distinct role.

Most caregivers are family members (children, parents, spouse, siblings) of the care receiver, and because they are related, their ‘caregiving’ is commonly perceived to be an extension of their role in these relationships. It is almost like saying, “You don’t need help to be somebody’s wife, mother, father or child, so why do you need help being a caregiver in those relationships?”

Most caregivers appear to agree that providing care is part of the relationship, but the problem is that the support they need to provide care is often missing. Even under normal circumstances (where no care is involved), everyone needs support in these roles. The situation is much more difficult when someone also needs to provide care; such a caregiver needs much more support.

This invisibility of the caregiver leads to caregiver isolation and is one of the areas that Caregivers Link plans to address.

Could you describe the common areas of concern caregivers have?

Top of the list is the need for trained attendants for home care.

Read the full post here : Invisibility of caregivers leads to their isolation: a development consultant shares her key perceptions

Our presence here makes a difference to her: a son talks of supporting his caregiver mother

Ranganath Subramoney is a Dubai-based consultant. His father, now 86 years old, lives in Bangalore and is suffering from Parkinsonian dementia; the caregiving is being primarily handled by Ranganath’s 78 years old mother, but Ranganath is in Bangalore ten days a month to help, besides remaining available over phone. Here Ranganath shares how he and his siblings try to ensure that their father is cared for, and their mother does not get overwhelmed. >

(Read )

Your mother has already described how care is being coordinated currently for your father by using a number of services (attendants for the day and night, and a dementia day care centre).

The arrangement for Ranganath’s father involves using a day attendant for 8am to 6pm, a night attendant from 8pm to 8am (all days), and availing a dementia day care centre’s service for 9:30 am to 4:30 pm, six days a week. Even with this arrangement, Rangathan’s mother has to handle some hours of caregiving alone. Read her interview here.

Yes, my mother has accurately described the modality used for my father’s care. I’d like to add that while the use of attendants for the day and night is good in its form and function, any disruption in the availability of attendants throws my mother into panic.

When my mother contacts the agency for a replacement, they tell her that they cannot send a replacement at such short notice, and need two or three days. The agencies supplying attendants do not seem to have the resource planning required to handle such emergencies.

For example, sometimes the attendant who is supposed to report for work calls up to say that he/ she will be delayed by a few hours, or that he/ she cannot come on that particular day because of some personal reasons. When my mother contacts the agency for a replacement, they tell her that they cannot send a replacement at such short notice, and need two or three days.

Read the full post here : Our presence here makes a difference to her: a son talks of supporting his caregiver mother

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.

Read the full post here : Voices: Caregiving in the news

Using various dementia/ home care services

Caregiving load increases. Caregivers cannot be present all the time and do all the work. They need support services

What caregivers can do: Understand the types of systems and supports available. Evaluate available services and facilities. Use support services and centers to get a break or to manage work outside home. Use general home nursing services for patients. Get dementia-specific care at home, or in special care units.

Looking after someone with dementia can be tiring physically, mentally, and emotionally. After the initial stages, most patients cannot be left alone at home. Families need help to care for patients when they have to go for errands or jobs, etc. An earlier page discusses using (discussed here: trained attendants for dementia home care). This page discusses other available dementia support and systems.

  • Home nursing services.
  • Home-delivery pharmacy.
  • Home visits for dementia patient assessment.
  • Dementia Day Care.
  • Observation/ behavior assessment stay.
  • Dementia Respite Care and Long-term stay facilities.
  • Information on available services and facilities in India.
  • >See also….

Read the full post here : Using various dementia/ home care services

Dementia Caregiver Resources across India

This page attempts to provide a consolidated list of dementia caregiver resources in India. It includes organizations such as ARDSI (Alzheimer’s and Related Disorders Society of India) and its varioous chapters across India, Dignity, Helpage, Old age solution portal, various dementia day acre and respite cares, helplines for dementia, seniors, and depression, palliative care resources, other India-based relevant resources, etc.

Read the full post here : Dementia Caregiver Resources across India