A Comprehensive Approach towards Dementia Care - Experience from Nightingales Medical Trust, Bangalore
Dementia and Old Age
“Ich hab mich verloren.”(I have lost myself). This remark in German brought to light a challenging neurodegenerative disease which has now become an epidemic. On 26 November 1901, Ms. Auguste Deter was being examined by Dr. Alois Alzheimer. She sat on her bed with a helpless expression and when asked to write her name, she wrote, “Ich hab mich verloren”. Ms. Deter had been admitted with memory problems, delusional thoughts, reduced comprehension and disorientation. She passed away on 8 April 1906 from sepsis caused by infected bedsores, high fever and pneumonia. The case was published by Dr. Alois Alzheimer in 1907. He called the illness Alzheimer’s disease. Similar cases kept coming for diagnosis, and scientists struggled to understand the pathology of the disease. Kraplien, a great neuroscientist, named this group of symptoms ‘dementia’.
What is Dementia?
It is a neurodegenerative disease characterized by a progressive, global deterioration in intellect including memory, learning, orientation, language, comprehension and judgement. The irreversible decline in global intellectual and physical functioning affects the person with dementia, their family and carers.
The Dementia India Report 2010 has estimated that over 3.6 million people are affected by dementia in India with a higher prevalence of the disease in women – 2.1 million are women while only 1.5 million are men. This is expected to double by 2030. The prevalence of dementia also increases with age. At the age of 65 years, the proportion of people affected is 1 in 20 increasing to 1 in 5 by the age of 85. The larger proportion of older women who have dementia can be explained by the fact that women tend to live longer than men.
The cost of taking care of a person with dementia is met by their families and the financial burden will only increase in the coming years. The challenge posed by dementia as a health and social issue is of a scale that can no longer be ignored. Despite this, there is gross ignorance, neglect and scarce services for people with dementia and their families. Coupled with that, there is lack of awareness and stigma. There are about eight residential care facilities exclusively for people with dementia in India and only 10 day care centres offer professional care. Domiciliary care is provided in five centres. About 100 memory clinics are functioning. Hence the available services are grossly inadequate to meet the needs of the more than 3.6 million persons with dementia in India.
Dementia results in a progressive decline of cognitive abilities, poor self-health care, physical dependency, wandering, aggression and difficult behaviours. There are also other reasons like children going abroad, lack of professional or trained caregivers and general social stigma that make dementia a challenge.
Although a high proportion of elderly people with dementia are cared for in their own homes the onset of behavioural problems such as these can be challenging, resulting in subsequent institutionalization of persons with dementia (PwD). However, residential care for the PwDs is not only an economic burden, it is also not as widely accepted in developing countries like India as it is in the Western World. It is even more stressful for older women, especially single or widowed women, as they are more dependent on their families to take care of them.
High prevalence of dementia among elderly women - In India there are over 3.6 million people affected by dementia out of which 2.1 million are women and only 1.5 million are men
Nightingales Medical Trust
Nightingales Medical Trust (NMT) a reputed NGO, has been working for the well-being of the elderly in Bangalore since 1998. NMT is striving to keep family bonds intact through innovative, family-based support systems for elders suffering from dementia from all socio-economic groups. Dementia care requires a holistic approach, ranging from assistance with establishing the diagnosis, to management and further planning. Keeping this in mind, NMT has the following projects dedicated to the different needs of people with dementia:
- Nightingales Centre for Ageing & Alzheimer’s (NCAA)
- Ellen Thoburn Cowen Memorial (ETCM) - Nightingales Dementia Care Centre
- Nightingales Dementia Day Care Centre
The NCAA and the Nightingales Dementia Day Care Centre are both located in Bangalore while the ETCM- Nightingales Dementia Care Centre is in Kolar, 60 Km. from the main city. While NCAA caters to dementia patients from the upper and upper middle class, the Centre in Kolar and the Day Care Centre cater to patients from the middle and lower middle class.
Nightingales Centre for Ageing & Alzheimer’s-
Established in 2010, NCAA is India’s largest comprehensive residential care facility for PwDs. NCAA is an 86-bed facility which provides short-term and long-term care. Well-researched principles have been incorporated in the holistic dementia care model implemented at NCAA, beginning with a safe and secure residential care facility, enabling activities of daily living, encouraging social interactive sessions and reducing stress and agitation among the PwDs. The facility also provides caregiver training and has an age-friendly building with walkways, lawns and garden that provides respite to both patients and their families.
NCAA’s infrastructure has been built by Bharat Electronics Limited with donations of well-wishers and clients who have availed its services. The land was given by the government at a concessional rate to support this cause. The centre is managed by a team of trained professionals. The clinical care team is multidisciplinary, including a geriatric psychiatrist, a consultant neurologist, general physicians, clinical psychologists, physiotherapists, activity coordinators, dementia nurses and trained caregivers. The ratio of 4 patients to 1 caregiver per shift is extremely high for a resource-limited population and is the key to NCAA’s excellent functioning over the last few years.
Various non-pharmacological therapies are being used at the centre such as hydrotherapy, pet therapy, activity therapy, Snoezelen3 therapy and other psychosocial interventions. Constant effort is made to integrate residents with society. Families are encouraged to participate in regular programs, particularly celebrations of all religious festivals and holidays. Families who live away from Bangalore are encouraged to keep in touch with their relatives at the centre via internet video calls. Several dedicated volunteers from the community make regular visits to the centre and accompany residents on field trips.
Over a 3-year period (2010-13), of the outpatients assessed, 8.7 per cent of individuals with dementia availed long-term care in NCAA and 15 per cent availed short-term care. Most of the caregivers have made use of the formal help available such as day care, professional caregivers and support group services. Short-term care was also availed of, mostly for respite, or management of challenging behaviours. However, in most cases, even after the challenging behaviours subsided, caregivers found it difficult to take the patient back home due to lack of community support in managing the illness.
Nightingales Dementia Day Care Centre-
While residential care should be the last resort in dementia, day care is a more affordable and an extremely helpful option, especially in the initial stages. Nightingales Dementia Day Care Centre, situated in the premises of Bangalore City Corporation, is supported by a grant from the Government. A very nominal fee is charged for utilizing the services. Nightingales has been running the day care centre since 2006, and about 15 patients avail this service every day. The day care centre is an initiative to provide a respite to family caregivers and delay permanent institutionalization.
Nightingales Telemedicine Enabled Dementia Care Centre-
It has been estimated that about 7.1 lakh PwDs belong to the middle class and about 78 per cent of them require institutional care at some point of the illness.4 However, existing care facilities charge over Rs 20,000 per month which is unaffordable for the majority of this population.
In order to reach this population, NMT has devised India’s first telemedicine enabled Dementia Care Facility. Inaugurated on 27 May 2014 in the premises of ETCM Hospital, the centre has 35 beds and provides both short and long-term stay along with memory screening. The clinical core team of NCAA which includes geriatric psychiatrists, neurologists, psychologists and therapists constantly monitor the centre using specially designed tele-dementia management software. In addition, the Centre has specially trained caregivers and qualified nurses who monitor the patients and provide support to them. The centre is based on the ‘hub and spokes’ model to make dementia care accessible and 30 per cent more affordable than NCAA without compromising on the quality of care.
Snapshot of NCAA’s work
|Number of people screened for dementia
|Number of people sensitized through awareness program
|Number of people assessed for dementia through memory clinic
|Number of long term admission
|Number of short term admission
|Number of day care services availed
Results of the Practice
Impact of Dementia Care provided by Nightingales Medical Trust at a glance:
- More awareness about dementia Major challenges in providing quality dementia care are the lack of knowledge about dementia and attitudes towards behavioural problems among staff and families. Dementia was viewed as a normal part of ageing, interventions were therefore considered to be pointless. Behavioural problems were seen as patients deliberately ‘being difficult’. These attitudes are gradually being changed with intensive training, exposure to patients with dementia and most importantly, by observing that the right kind of care can ameliorate behavioural problems.
- Increase in the number of assessments Free memory screening camps and advocacy efforts have led to more people approaching the doctor to get their memory screened for any signs of dementia. People with dementia are now being brought frequently to the clinicians for suggestions and recommendations. There has been a shift of attitude from “nothing can be done once the diagnosis is established” to “there is a lot that can be done”.
- Reduced care giver burden The range of services that are being provided has led to a reduction in the burden on caregivers. People who can still care for patients at home visit the memory clinic for suggestions and are trained to look after their loved ones better. People who need their parents to be looked after during the day time avail the day care services. When it becomes extremely difficult to manage, there is residential care which also allows the patient to go back home if their behaviour improves.
- Better quality of life to people with dementia A combination of psychosocial interventions, personalized care, training and pharmacotherapy has led to better management of behaviours and improved the quality of life for the patients. An individualized, structured, cognitive rehabilitation program is also prepared for each resident taking into account the severity of their dementia.
- Affordable and Accessible dementia care services There is a dearth of experts available for mental health problems / psychiatric problems in India. Most of the people cannot even access basic medical care. Access to specialized care services such as mental health is negligible. For the 3.7 million people with dementia, the services need to accessible and the only way is through technology. NMT’s telemedicine enabled centre has enhanced the reach to high quality dementia care in a comparatively cost effective manner.
Recognition for Dementia Care
Alzheimer’s & Related Disorder Society of India (ARDSI) is a national NGO dedicated to care, training and research in dementia and has 20 chapters across the country. Nightingales Medical Trust has been identified to promote the Bangalore Chapter of ARDSI.
Having successfully conceived and established different dementia care services, NMT is committed to replicate the services in different parts of the country. One of the ways is by establishing more telemedicine enabled dementia care centres and services using the expertise gained over a period of time. This will make dementia care accessible and affordable.
The projects established by the Trust in the field of dementia are backed by standard operation procedures, systems, professional management and detailed documentation. This makes all NMT projects replicable, scalable as well as sustainable. Through regular advocacy NMT is making an effort to influence the government to recognize dementia as a health care priority and initiate more projects such as these all across the country.