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Submitted by PatientsEngage on 8 November 2016
Profile picture of Daksha Bhat, a dementia information advocate in a green top

Dementia is difficult. Absence of diagnosis, counselling and support makes matters worse. Basic awareness and services can help decrease caregiver stress. Daksha Bhat of Varishta analyses the situation on dementia care in Gujarat.

Dementia may start as a slow, creeping change that gradually makes its inroads into our lives. It can happen to anybody who is over 60. Beginning with a gradual decline in the capacity to recall important things, it gradually manifests as a slow deterioration in the ability to manage normal day to day affairs, unusual changes in behaviour, and strange moods ranging from apathy to aggression.

At some point there is a realisation that these changes are not a part of normal ageing and the persons themselves or family members may seek professional help. There are different ways that the story may progress from this point. The very basic needs of the person with dementia and the caregivers are diagnosis, counselling, caregiving and other support. In Gujarat, India, where I live there is a huge gap between these needs and availability of services.
 
1. The Importance of Diagnosis

Getting a dementia diagnosis is very important because it enables information seeking on how the situation can be managed better, and leads to appropriate medical treatments if required. It also paves the way for planning for future caregiving. The first stumbling block is getting to a medical professional. Often these problems are not discussed even with the family physician, let alone consulting a specialist. Part of the reason for this is the stigma surrounding what has unfortunately been termed as a “mental health problem.” In addition,  reluctance to ask for help, difficulty in going through the process of taking an appointment and travelling to the doctor, are also reasons that delay the decision to take medical advice. Often family members disagree on the need to visit a doctor, and the result is that no action is taken. Awareness of dementia can help overcome such obstacles to diagnosis.

A Typical Example how Dementia is not diagnosed, and hence not treated on time

Divya’s father-in law, a retired engineer, gets angry for no reason at all and shouts loudly at the other family members, something he never did before. He often stands at the gate and accosts unknown passers-by and vegetable vendors with meaningless questions.

Divya wants to take her father-in law to the doctor but her sister-in-law who lives in another city claims that her father behaves in this fashion because he is unhappy, and Divya needs to address his needs better instead of labelling him as senile.

Divya’s husband intervenes and they take the elderly gentleman to their family physician. His behaviour is impeccable during the 10 minute visit, and the doctor says that these could be changes brought on by ageing.

2. Inadequacy of Information Offered

It is an unfortunate truth that very often when families approach their family physicians with their worries they are told that this is a normal part of ageing and no further information is proffered, no diagnostics are initiated or caregiving planning facilitated. This is truly the most unfortunate thing to happen, because even though the family has gone to what they perceived as the right place to get answers, the truth has been withheld from them. Increased awareness helps at this point too. One of the reasons cited by doctors is that, since they cannot offer any treatment, they withhold the diagnosis. In such cases, the availability of support services would perhaps lead to a different approach.

3. Daunting Medical Process

For those who are advised to go for further assessment it often means visiting a psychiatrist or a neurologist which in itself is a daunting prospect. For the elderly, visiting a doctor is fraught with obstacles. The journey from home to the clinic entails dressing up, getting out of the house and into a vehicle. At the clinic, navigating to the waiting room, followed by an uncomfortable wait until attended to is reason enough for many elders to decline treatment. Often a battery of tests is prescribed, which may need going to different areas of the facility or even visiting different locations in the city. Then again there is the meeting with the doctor after the tests to be dealt with.

4. Lack of information in local languages

Given the fact that doctors are hard pressed for time, it is inevitable that they have less time to give per patient. The counselling that the family and the patient require is just not available. So those who have the ability, go online and read up on these issues or buy books about it. They are naturally a bit better placed than those who do not have access to these sources of information. Most of the information is available in English, which does not help those who do not read English. Again if one is not very familiar with English the ability to get information from these sources is very limited. There have been a few attempts to provide information in local languages too, but these are definitely not sufficient for the quantum and range of support that is required.

5. Lack of support for Caregivers

Every caregiver has questions. Good advice on how to manage toileting, how to handle awkward moments and disturbing behaviours is very hard to find. Even more difficult is finding a sympathetic hand to hold, someone to share the inevitable pain and frustration that come with the responsibilities of caregiving. In Gujarat there are no support groups and no counselling services.

Hands on help with caregiving is another big problem, family caregivers can only do so much, and everybody needs a break sometimes. Where the family is not large or others in the family do not share responsibilities the caregivers need to look for help from outside. This is often very expensive. Even if they are affordable they are mostly not trained in managing people who are cognitively impaired, and moreover they don’t have the necessary soft skills training and attitude. Due to this mismatch in the actual need and availability, those who hire professional caregivers have to go through a lot of turnover. This constant change means that the family repeatedly needs to go through the process of identifying good candidates, training them, and keeping checks on them. When the caregiver needs leave, finding a replacement is a daunting job. Often the care giving help is needed temporarily. Getting help for just a few hours a day or a couple of times a week is next to impossible as the caregivers expect to be employed for a full day. Most families maintain lists of caregiver phone numbers for desperate times.

The pressing need

When I speak to people who have dealt with or are dealing with dementia , the two things that are at the top of their mind are that they did not get sufficient information at the outset, and learnt things on their own through trial and error over a long period of time, and secondly they wish that they could get good help at a reasonable price.

Addressing these two needs:  creating awareness and training caregivers actually is not so difficult. Once this is in place, daycare and residential care facilities are the next step towards providing much needed support to the elderly with dementia and their families.

Click on the logo of Varishta to access information on dementia in Gujarati.

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