the ageing mind€¦ · •healthcare innovation and entrepreneurship •duke university - august...
TRANSCRIPT
Varishta
An initiative by Silversmile Eldercare Foundation
Registered u/s 8 of the Companies Act 2013
www.varishta.org
Age
ing
is N
orm
al
Dem
enti
a is
Not
The Progression of Dementia
Memory loss
Unable to manage finances
Unable to Plan
Forgets current time or location
Unable to find the right words to explain what
they want
Personality change
Apathy/Aggression
Disinhibition
Problems walking
Problems talking
Unable to swallow
Careless about
hygiene / dressing
Unable to bathe dress
without help
Fully dependent
Other complicationsPneumonia,
BedsoresUTI
Cannot express
painBathing Feeding
Nursing Required
Confused or
forgetful
Needs support for some activities Needs help for all activities Totally dependent on others
Dementia – What is it?A general term used for progressive loss of brain functions that takes place when nerve cells in the brain (called neurons) die or no longer function normally, affecting normal abilities and increasing dependence
Dementia causes memory loss (own house, relative’s names)
It affects thinking, speaking, and making decisions (cannot communicate thirst, pain)
It interferes with the ability to perform normal activities of daily living (shopping, handling finances, driving, personal hygiene)
Persons start behaving differently (includes insomnia, wandering, apathy, and aggression)
In its final stages, dementia makes the patient fully dependent (needs to be bathed, fed)
4% of elders after age 65 will have progressive dementia
caused by untreatable diseases.
2/3 of dementia is caused by Alzheimer’s disease Vascular dementia is the next leading cause.There are more than 100 diseases that can cause dementia.Dementia is NOT a part of normal ageing
New cases each year: 77 lakh
One new case every four seconds.
Much of this increase is attributable to the rising numbers of people with dementia in low and middle-income countries.
Number of people with DementiaWorldwide
Estimated 2010 356 lakh
Projected 2030 657 lakh
Projected 2050 1154 lakh
Numbers expected to double by 2030, (to 7.4 lakh) costs would triple
IN INDIA
Over 4.2 million elderly people have dementia in
India. Out of which more than 22 thousand are in
Ahmedabad. Unfortunately there is very little
awareness in this area. Many elders are not diagnosed
till it is too late, caregivers are overburdened because
there is no support or counselling available.
As the number of older people increases there will
be an increased need for better dementia care.
Present services are woefully inadequate.
Status in India (2010)
Approximate number of facilities in
India providing services exclusively
for people with dementia
• Outreach
In order to increase awareness and understanding about dementia, visits to, colleges, offices institutions and other places where people may gather should be arranged to talk about and increase awareness of the issues. Posters, leaflets, booklets should be created and displayed at popular venues.
• Support Group
Support groups to be formed to provide emotional respite, and informed advice to caregivers & dementia patients. They create avenues for sharing experiences, information and solutions. Having somebody to talk to helps decrease stress and results in better outcomes for patients, carers and their families. The intention would be to provide a supportive atmosphere and for the participants to contribute a minimal voluntary amount to cover meeting expenses.
• Assessment Centre/ Memory Clinic
Memory Clinics are places where the elderly can be taken for evaluation without the stigma of visiting a psychiatrist. This can be staffed by a psychologist or a trained person to carry out basic assessment. Here people who feel that they have a memory disorder can be administered basic memory and cognitive screening tests. They would then be recommended to go for further medical evaluations. Practising psychiatrists can be requested to provide pro bono services.
• Training Facility
Training for family caretakers, or for professional caretakers is very essential. The training would enable them to understand the disease, give physical help, respond to behaviours, plan & deliver better care.
• Day Care
Day care centres can give some respite for people who provide care at home for relatives with dementia.. In advanced day care institutions, patients can even bathed and changed at the centre. For a preliminary period of six months it would be advisable for the institute to provide basic services to elders with manageable behaviours before progressing to serve those with advanced problems. Stimulation in day-care improves the quality of life for the person.
• Home Care
Where persons are unable to come to the day centre, due to inability or preference of the patient and family, it is convenient to arrange for domiciliary care. This care can be provided on a daily basis or for a single day or slots of four hours. Currently people who require such occasional caregiving are at a loss for services. It is necessary that such care takers should be aware of the principals of care giving, trained to provide optimum care and also be reliable and trust worthy. Care giver placement would be followed up with feedback, evaluation and performance management to ensure safe and superior services. Caregivers can be sourced from the training programs, or employees.
• Library and AV Centre
A collection of books and digital content for professionals who would like to learn more, for families, caretakers and people who need information, and as a resource centre for the people working with the foundation. The library would also provide support to outreach programs, training programs and create content in Gujarati, and other regional languages.
• Counselling
Provide counselling on issues that trouble persons and their families. These may range from behavioural problems, to legal, social and family issues. After a diagnosis of dementia, this is essential to understand the possible future paths.
• Research
Encourage students of social work, psychology, gerontology to visit our centre and understand issues. We will support ongoing research by doctors and scientists in the hope that there would be solutions to improve the lives of people. We will attempt to support their research by providing them with facilities, assistance and help them to leverage their learning.
Expansion.
Establishment of new centres and branches in other areas and cities
Residential Care.
Creation of Old Age Home for Persons with Dementia, (PWD)
Advisory Service
Home remodelling advisory services for households where there is a PWD
Advanced Training
Establishing a Geriatric Care Manager program.
Help line
Phone help line, for emergency assistance, and guidance.
Routine Checking at Home
Checking up on elders who live alone, by visiting or on phone.
Senior Meals
Arrange for specialised meals delivery and feeding if necessary.
Dementia Cafe
A safe place where PWDs and caregivers can experience a meal outside.
Adding other services which are requested by PWDs and their caretakers
Possible Timeline
• The speed of progress would depend upon the funds mobilised and the learning.
• In some areas transfer of knowledge could be speeded up by linkages with other similar institutions.
Business Model
• There is generally a great reluctance to pay much for anything to do with the very elderly, both on the part of the elderly themselves and their offspring.
• Inflows would be from registration and utilisation of services such as assessment, day care, home care, and counselling sessions etc.
• However it may be necessary to keep the charges to a minimum and also in some cases the charges need to be whatever is ‘affordable.’
• Additional finance through grants, donations and fundraisers would be necessary.
Who else is working for the Elderly?
• Senior Citizen Groups & Old Age Homes
• Only for those who are capable of managing themselves well
• Care for Disabled Elderly
• One organisation in Vadodara – does not cover those with advanced dementia. There are a few centres in Bangalore, Delhi, Kerala.
• Home Care Providers
• Unorganised sector, may not be trained or reliable, and respite care not available.
• Doctors
• They only have time to provide diagnosis and medicines. They cannot provide the extensive support needed. Most cases do not reach the doctor till it is too late.
We are already behind in establishing the needed support systems.
There is no one demographic group that is affected. Growing old is a societal achievement that reflects our progress in the areas of health and lifeline service management.
Dementia in the Elderly affects the Person, and also their care givers, families and loved ones.
This is important for Those who have or may have the responsibility of
caring for an aged person in the future, - parent, spouse, sibling.
Those who plan to live longer.
This is what has been done
• A website in English and Gujarati – www.varishta.org
• A facebook page – https://www.facebook.com/varishtacare
• Video on YouTube in Gujarati for awareness
• A Slideshare presentation in Gujarati on dementia
• A twitter handle -@varishtacare
• Creation of basic awareness material and posters.
• Awareness through talks.
• Book published in Gujarati
Who do we need to reach out to
• Families with PWDs – Door to door / society campaigns, road shows, stalls in public gardens.
• Community – Talks at Rotary / Lions / Senior Citizen Groups / Company Gatherings / Wellness centers.
• Professionals – Lawyers /Accountants / Government officials / Police through talks, sensitisation.
• Medical – Doctors / Nursing staff / Physiotherapists / Dieticians
• Colleges – Especially MSW, Nursing, Paramedical
How can we reach out
• Posters in Hospitals and other Institutions
• Flyers in clinics etc
• Online• Facebook• Twitter• Meetups• Website• Blog
• Radio
• Presence at Events
• Word of mouth
The case for action in Gujarat
• There are no geriatric out patient or inpatient specialised services available.
• There are no “day care” centers for elders with dementia or those who are unable to carry out their Activities of Daily Living. (ADLs)
• There are no dedicated counselling or advisory services available for them or their families, or support groups for caretakers.
• Even the medical and nursing professionals are often unaware of the special needs of the elderly and treat them mostly like other patients.
• Old age homes do not cater to those who are unable to manage their ADLs.
• Old age homes are not administered by persons trained in geriatric care.
• Recreational facilities for senior citizens are focused on active elders.
• There is a need to create awareness, encourage dialogue about these problems, remove the stigma and provide training and education in the area of eldercare.
Low Health Seeking
Behavior.
Feeling that it is Normal Ageing
Lack of
Feeling that nothing can be done
Lack of training and
need scaling up
Source:ARDSI India Report 2010
people with dementia and less specialist
manpower
Barriers to Dementia Care in India
Lack of
Initiatives for People with
dementiaPoor
awareness even within
the
fraternity
Lack of
for dementia services, research
& training
Daksha Bhat is the founder of Silversmile Eldercare Foundation
She has an MBA and 15 years of experience in the corporate field handling end to end projects. Her last position was Director Systems Research and IT, Tam Media Research Pvt Ltd.
She has good planning, process design and management skills. Her vision is to create a Dementia Awareness and Care Centre model that can be replicated across the state and the country.
Other Relevant Certifications
• Care of Elders with Alzheimer’s Disease and other Neurocognitive Disorders
• John Hopkins School of Nursing - November 2013
• Growing Old Around The Globe
• University of Pennsylvania– August 2013
• Healthcare Innovation and Entrepreneurship
• Duke University - August 2013
• Training and Learning Programs for Volunteer Community Health Workers
• Johns Hopkins University – December 2013
• Understanding Dementia
• Faculty of Health UTAS – June 2014
