Experiences, observations and tips shared by health care professionals and volunteers and relevant for family caregivers are shared below. These may be useful for families handling difficult situations in care or having related concerns and thus empower families in their care.
- The dementia diagnosis process: a four-part interview with Dr Sudhir Kumar .
- Home care for late stage dementia, information and practical suggestions, a six part series with Dr Soumya Hegde.
- Use “Active Ageing” to age better and reduce dementia risk: a two-part interview with Ramani Sundaram, a neuroscience research scientist.
- Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse.
- A volunteer describes how to have activities and outings with dementia patients.
- A social worker explains the working of a dementia day care centre.
The dementia diagnosis process: a four-part interview with Dr Sudhir Kumar .
A proper diagnosis is essential to know if someone has dementia, and then to start planning the care for the person. But families are often unsure how to prepare for the doctor visit, what the doctor may ask, and what will happen during the visit. To help families understand and handle the diagnosis process, we present a four-part series on the diagnosis process with Dr CT Sudhir Kumar, a Consultant Psychiatrist with several years of experience in dementia and elderly mental health services in the UK and India. Read his explanation of the diagnosis process and his practical suggestions for families to prepare for and handle the diagnosis process effectively.
The interview series starts with a discussion of some basics of how families can start the process of selecting a doctor and preparing for a visit in Part 1. Some important terms related to dementia are also discussed. Part 2 then goes into details of how families can prepare for their meeting with the doctor, such as the type of symptoms and other information to tell the doctor about and preparing the medical history file for the doctor. Part 3 focuses on the doctor visit, such as how to explain the situation, and what sort of things the doctor may ask during the visit, and about tests, scans, etc. And in the concluding part, Part 4, we focus on getting clarity on the diagnosis and any prescribed medicines, getting some important information for ongoing treatment and care. There are also some tips on handling review appointments. Read the interviews here:
- The dementia diagnosis process, Part 1: Getting started and selecting a doctor.
- The dementia diagnosis process, Part 2: Preparing for the doctor consultation.
- The dementia diagnosis process, Part 3: Meeting the doctor and getting a diagnosis.
- The dementia diagnosis process, Part 4: Understanding the diagnosis and what comes next.
Home care for late stage dementia, information and practical suggestions, a six part series with Dr Soumya Hegde.
Persons in late-stage dementia are almost totally dependent, confined to a wheel chair or a bed, and have serious memory problems and physical complications. In India, care for persons in this stage is usually done by family caregivers, and can be very challenging. We interviewed Dr. Soumya Hegde, a Bangalore-based Consultant Geriatric Psychiatrist with extensive experience in supporting people with dementia and their families through all stages. Read this six-part interview series discussing various aspects of home care for advanced dementia, and useful information and several practical suggestions.
The interview series begins with a discussion on how to organize the home and prepare for smoother care for someone with advanced dementia. We then discuss how to get medical advice and support for a late-stage person, in spite of their reduced mobility, etc. Special topics of daily care are then discussed, many of them related to areas often forgotten, such as skin care, bruises, bed sores, constipation, catheters, dental care, etc. Part 5 discusses a major concern area for late-stage care: when the person starts having swallowing and eating problems, and doesn’t seem to be taking in enough food. The interview looks at possible reasons. And finally, we discuss the very difficult decision: tube feeding. Read Dr. Hegde’s explanation of the options, the pros and cons of each, and her suggestions on what families can look at while making the decisions, and how the person may decline. Read them here:
- Home care for late stage dementia, Part 1: Prepare for home care.
- Home care for late stage dementia, Part 2: Getting medical advice and preparing for decline.
- Home care for late stage dementia, Part 3: Bruising, skin care, exercise, massage, bedsores.
- Home care for late stage dementia, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life.
- Home care for late stage dementia, Part 5: Eating/ swallowing problems.
- Home care for late stage dementia, Part 6: Tube feeding and related decisions.
Use “Active Ageing” to age better and reduce dementia risk: a two-part interview with Ramani Sundaram, a neuroscience research scientist.
It is common for people to worry about how their physical and mental abilities will reduce as they grow old. Dementia caregivers also worry about their risk of getting dementia. In a two-part series from 2017 to discuss what can be done to reduce the chance of problems, Ramani Sundaram, who was then a neuroscience research scientist in charge of an “Active Ageing” program at the Nightingales Trust Bagchi Centre for Active Ageing (Bangalore), described their holistic program aimed to bring lifestyle modification and ensure health and happiness of the elderly, thus making ageing a positive experience.
In part 1, we talked about the program and its context and objectives, how participants are assessed before they join, and also listed the three components of the program (physical activity, mental stimulation, and socialization). The first component, physical activity, was discussed. In Part 2, we discussed the mental and social components of the program and talk about how persons who can’t leave home (like many caregivers) can adapt and use these. We also talked about the use of the program for persons with mild cognitive impairment or early dementia. Read the interviews here:
This interview was done in 2017. During the pandemic, the Active Ageing program was moved fully to an online version and it may have changed further since then. However, the concepts and protocol explained in this interview remain valuable for persons interested in ageing well and there are many practical suggestions on what we can do at home for active ageing for ourselves and to help family members who may be ageing or facing decline.
- Use “Active Ageing” to age better and reduce dementia risk: part 1.
- Use “Active Ageing” to age better and reduce dementia risk: part 2.
Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse.
In this interview, a registered nurse, Sheila, with experience in Aged Care assisted living facilities (long-term stay homes for elders) and in an acute hospital which included care for persons with dementia, shared tips based on her professional experience to help family caregivers looking after persons with dementia at home. The interview includes what sort of activities can be used to keep patients busy, and changes that can reduce the agitation and disorientation of patients. Simple techniques to keep patients busy, like using rummage boxes and fiddle mats, are described. Read the interview here: Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse.
A volunteer describes how to have activities and outings with dementia patients.
Dementia patients can enjoy outings to places they find interesting if the outings are planned well. Read Satish Srinivasan, then a volunteer at a dementia day care centre, describe arranging such outings and the experience of persons with dementia. While the day care has since closed, the interview is useful for tips on arranging activities and outings for those with dementia even for home caregivers. Taking patients for outings: a volunteer shares his experience.
A social worker explains the working of a dementia day care centre.
Many of us have no idea of what care in a dementia care centre is like. In this interview, read Jincy Shiju’s (then a social worker at a dementia care centre) description of how her day care centre looked after persons with dementia, the activities the persons did, difficulties faced by the staff and how they handled these. While the day care has closed since then, the interview still provides insight into aspects to discuss if considering a day care. Care in a dementia day care centre: a social worker explains.
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