PROJECTS
Project Name: Susheg Jivith Neuro Care
Project Description and Goals
Susheg Jivith Neuro Care is formed with the aim of providing residential care to neurological patients in general and those with Alzheimer’s Dementia in particular. There are hardly any institutions in India that provide residential care to those diagnosed with Alzheimer’s disease and other forms of dementia. Susheg Jivith Neuro Care is an attempt to address this lacuna by offering its services to all irrespective of caste, creed or religion.
The building is constructed exclusively for neurological patients, particularly those with Alzheimer’s disease. The facility is designed keeping in mind the needs of these patients and to provide quality care. It has spacious patient rooms designed to have a maximum of two patients per room or only one patient and a family member in special circumstances. It has facilities such as a room for prayer/meditation, physiotherapy, music therapy, a clinic, a garden, indoor games/board games and physical and mental exercises. The facility is in a rural area, in a serene environment, surrounded by greenery that will provide a soothing environment. Wide corridors and lounges allow easy movement to patients rather than being confined to the bed.
The building is about 30,000 sq. ft plus a covered and secured terrace. The facility on an acre of land near Mangalore city (coastal Karnataka) with 27 patient rooms. A ramp and an elevator are provided to help patient mobility. Good enough open space is available around the building which will have a walking trail and a garden.
The facility
➾ Provides residential care to persons diagnosed with Dementia
➾ Encourage a family member to live with the patient (in case of AD)
➾ Provide serene environment and ample space conducive to the wellbeing of residents
➾ Engage in activities that help slowdown or arrest the progress of the disease and include
➾ Round the clock professional nursing care
➾ Symptom relief and medical assistance
➾ Physiotherapy and recreation
➾ Neuro-psychological stimulation
➾ Nutritious diet
OWNERSHIP TITLE
The piece of land on which the building is constructed was gifted to Susheg Trust by the Founder Joseph Gerald Pinto. The land has been conveyed to (the title to the property has been transferred to) Susheg Charitable Trust by a ‘Gift Deed’.
DIAGNOSIS AND COUNSELLING CENTRE
Early detection of Dementia, counselling and advice on the means of restricting the progress of the disease can help many people from going through the travails of dependency and help them lead a healthier life for a longer time.
We intend to institute an Alzheimer’s Diagnostic Centre to assess memory impairment, thinking abilities, functional skills and behavioural changes. Tests and their results will help those who exhibit early symptoms of the disease with proper treatment, create awareness among family members about the disease and care that needs to be provided. Although AD is not curable, early intervention and strategies to slow down the decline in loss of memory will be beneficial to the patient and the family members.
COUNSELLING
Many caregivers get to their wits end in looking after their loved ones. Getting pensive and depressed due to helplessness and frustration, caregivers look for a shoulder to weep on, someone they can lean on and provide solace. We already provide counselling over the phone and wish to provide personal counselling as well.
HOME VISITS
Visiting homes of patients where the family members provide care themselves may help in assessing the condition of the patient, advising caregivers on handling the behavioural issues, checking on the diet and suggesting methods of improvement
TRAINING
We intend starting training people in nursing so that they can be employed as Nursing Assistants. We wish to choose interested youth and train them in patient care. The nursing aides thus trained will be either employed at our facility or can find employment as home-care providers for in-home care of patients. The training will be provided free of cost with an aim of empowering youth from economically disadvantaged sections of society. Many of those trained can be employed by Susheg Trust.
COUNSELLING STAFF & NURSES
Dementia, especially Alzheimer’s disease requires care and attention markedly different from nursing the patients in the hospitals. Reasons are many. The behavioural issues of the patient, forgetfulness, aggressiveness, self-pity, confusion are some of the issues faced by the caretakers. During advanced stages of the disease the patient becomes entirely dependent on the caregiver.
The therapeutic relationship between nurse and patient is central to high-quality nursing care. Due to the constant and unpredictable demands and conditions of the patients, the nurses and care takers by themselves can be under great stress and despair leading to burnout. A plan to constantly motivate, counsel and upgrade knowledge is essential to keep the morale high and to approach every situation with empathy and confidence.
Susheg Trust plans to address these issues by providing in-house training in:
➾ Dementia, its variants, causes and mitigating techniques
➾ Patient management techniques
➾ Communication, problem-solving, stress management and other life skills
The Need for Health Care Facility for Dementia Patients
According to studies conducted by various institutes, India has 4.5 million dementia patients, a majority of them affected by Alzheimer’s disease (AD). About 65% of them are women.
The studies further conclude that the number of dementia patients is likely to double by the year 2030. Lack of awareness of the disease, apathy, negligence, lack of recognition of the disease as a major health issue and lack of care facilities make dementia a matter of great concern in the coming years.
Who takes care of these patients? The burden is on the loved ones, the family members, usually the spouse or daughters-in-law and other family members at home. The condition of the care givers is often worse than that of the patients as the caregiver remains constantly aware of her own helplessness and that of the patient. The need for constant vigil, attention and having to put up with repetitive requests, mood swings and other irritants make caregivers life miserable.
AD is caused by the death of brain cells which results in the loss of functions performed by those cells. The cells are lost forever. The disease is progressive with more and more brain cells perishing with time causing loss of more and more brain functions. Loss of memory and co-ordinations are early visible signs of AD. With the progress of the disease, the patients lose other brain functions eventually leading to total dependence on caregivers for all functions. As of now, there is no cure for Alzheimer’s disease (AD).
There are very few residential care facilities in India for people with dementia. Even in coastal Karnataka which has a burgeoning medical care industry with hospitals, clinics, senior care homes, orphanages for children and adults, homes for the destitute, there is not a single facility for dementia patients in an area covering 15,000 sq kilometres. Hospitals are neither designed nor equipped to provide long-term, round the clock service needed by those battling dementia.
Irrespective of the statistics, the fact is that the facilities and assistance available to people with dementia in India are grossly inadequate. In addition to ignorance, lack of awareness of the disease and behavioural issues, our country is plagued by social stigma when the disease is brain related whether it is psychiatric or a brain disease. The diseases of the brain are not visible like physical illnesses and therefore do not evince sympathy. Quite often the patient is berated for putting on an act, being stubborn, causing embarrassment and being a nuisance. Social stigma makes people to hide or deny the problem rather than addressing it. The overall condition of the dementia patients is dismal. Confining them to the bed with restraints or locking them up in a room is considered by most families to be the best solution.
With the rise in demands on life, lack of time and inherent difficulties in taking care of patients with serious neurological illnesses it is very important to establish professional care centres for these patients. These centres will take the burden off the shoulders of family members and allow the patients to lead a life of dignity with their needs being addressed. Professional help from medical fraternity, exercises for mental stimulation, physical exercises, right food can help arresting the progress of the disease