Category: Campaign

Categories
Campaign

India will need several more Alzheimer’s caregivers: Report

The just-released World Alzheimer Report 2013 reveals that the global Alzheimer’s epidemic has created shortage of caregivers around the world.
by Alzheimer’s Disease International (ADI) and Bupa

The World Alzheimer Report 2013 Journey of Caring: An analysis of long-term care for dementia,  released yesterday, calls for Governments around the world to make dementia a priority by implementing national plans, and by initiating urgent national debates on future arrangements for long-term care.

Alzheimer’s Disease International (ADI) and Bupa commissioned a team of researchers, led by Professor Martin Prince from King’s College London, to produce the report.

dementiaThe report reveals that, as the world population ages, the traditional system of “informal” care by family, friends, and community will require much greater support. Globally, 13 per cent of people aged 60 or over require long-term care. Between 2010 and 2050, the total number of older people with care needs will nearly treble from 101 to 277 million. Long-term care is mainly about care for people with dementia; around half of all older people who need personal care have dementia, and 80 per cent of older people in nursing homes are living with dementia. The worldwide cost of dementia care is currently over US$600 billion (£395 billion), or around 1 per cent of global GDP.

The report states that more attention needs to be paid to maintaining and enhancing quality of life; helping those affected, and their families to ‘live well with dementia’.

Ten-fold increases in research funding are needed to re-energise the work on dementia prevention, treatment and care. This investment is essential to mitigate the impact of the global dementia epidemic on future long-term care needs, and improve quality of care. A key finding is that the number of dependent older adults will increase to 277 million by 2050, and half of all older people who need personal care have dementia.

India is likely to have a 100 per cent increase in dependent older adults.

The Report recommends that:

– Systems should to be in place to monitor the quality of dementia care in all settings – whether in care homes or in the community. Autonomy and choice should be promoted at all caring for alzheimer's patientsstages of the dementia journey, prioritising the voices of people with dementia and their caregivers.

– Health and social care systems should be better integrated and coordinated to meet people’s needs.

– Front-line caregivers must be adequately trained and systems will need to be in place to ensure paid and unpaid carers receive appropriate financial reward in order to sustain the informal care system and improve recruitment and retention of paid carers.

– Care in care homes is a preferred option for a significant minority – quality of life at home can be as good, and costs are comparable if the unpaid work of family caregivers is properly valued

– The quality of care in care homes should be monitored through the quality of life and satisfaction of their residents, in addition to routine inspections, as care homes will remain an important component of long-term care.

Professor Martin Prince, from King’s College London’s Institute of Psychiatry and author of the report, said: “People with dementia have special needs. Compared with other long-term care users they need more personal care, more hours of care, and more supervision, all of which is associated with greater strain on caregivers, and higher costs. Their needs for care start early in the disease course, and evolve constantly over time, requiring advanced planning, monitoring, and coordination.

“We need to value the unpaid contribution of family caregivers more, and reward paid caregivers better. We can build quality into our care systems, but to do so while containing costs and achieving equity of access for all will be a challenge.”

Marc Wortmann, Executive Director, Alzheimer’s Disease International said: “We need to value those that provide frontline care for people with dementia. This includes paid, as well as unpaid family caregivers, who share much in common. Governments need to acknowledge the role of caregivers and ensure that there are policies in place to support them.”

Dr Paul Zollinger-Read, Chief Medical Officer, Bupa, said: “An ageing population around the world means that improving dementia care and support is one of our generation’s greatest healthcare challenges – a challenge we must tackle. We’re calling on Governments around the world to make dementia a national health priority by developing national dementia plans.”

Read the full text of the report here: www.alz.co.uk/worldreport2013

The Metrognome is committed to the cause of dementia and Alzheimer’s awareness. This month, we’re covering the stories and statistics on dementia and Alzheimer’s that really matter. Do write to us at editor@themetrognome.in if you have information and anecdotes to share. 

(Pictures courtesy nightingaleseldercare.com, www.indianexpress.com. Pictures have been used for representational purpose only)

Categories
Campaign

‘My father could act normal when he wanted to…’

Writer Jacqueline Marcell writes a piece on caring for her Alzheimer’s-afflicted father and what caregivers of Alzheimer’s patients should know.

JacquelineFor eleven years I pleaded with my ‘challenging’ elderly father to allow a caregiver to help him with my ailing mother, but he always insisted on taking care of her himself. Every caregiver I hired soon sighed in exasperation, “Jacqueline, I just can’t work with your father. His temper is impossible to handle and he’s not going to accept help until he’s on his knees himself.”

When my father’s inability to continue to care for my mother nearly resulted in her death, I stepped in despite his loud protests. It was heart-breaking, as one minute he’d be my loving dad and then some trivial little thing would set him off and he’d call me nasty names and throw me out of the house the next. I took him to several doctors, only to be flabbergasted when he could act completely normal when he needed to.

Finally I stumbled upon a thorough neurologist, specialized in dementia, who put my parents through a battery of blood, neurological, memory tests and P.E.T. scans. After ruling out numerous reversible forms of dementia, such as a B-12 and thyroid deficiency, and evaluating their medications, I was stunned by the diagnosis of Stage One Alzheimer’s in both of my parents – something all their other doctors missed entirely.

What I’d been coping with was the beginning of Alzheimer’s, which starts very intermittently and appears to come and go. I didn’t understand that my father was addicted and trapped in his own engrained bad behavior of a lifetime of screaming and yelling to get his way, but that it was coming out intermittently in inconsistent spurts of irrationality. I also didn’t understand that demented does not mean dumb (a concept not widely appreciated), and that he was still socially adjusted never to show his ‘Hyde’ side to anyone outside the family. Conversely, my mother was as sweet and lovely as she’d always been.

Alzheimer’s makes up 60-80 per cent of all dementias and there’s no stopping the progression, nor is there yet a cure. However, if identified early there are four FDA medications (Aricept, Exelon, Razadyne and Namenda–and many more in clinical trials) that in most people can mask dementia symptoms and keep the patient in the early independent stage longer.

Once my parents were properly treated for the Alzheimer’s, as well as the often-present depression in dementia patients, and then my father’s aggression, I was able to optimize fluid and nutrition with much less resistance. I was also able to manage the rollercoaster of challenging behaviors. Instead of logic and reason, I learned to use distraction and redirection. I capitalized on their long-term memories and instead of arguing the facts, I lived in their realities of the moment. I also learned to just go-with-the-flow and let hurtful comments roll off. And most importantly, I was able to get my father to accept two wonderful live-in caregivers. Then with the tremendous benefit of adult day health care five days a week for my parents and a support group for me, everything finally started to fall into place.

Alzheimer’s disease afflicts more than 5.4 million Americans, but millions go undiagnosed for many years because early warning signs are chalked up to stress and a ‘normal’ part of ageing. Since one out of eight is afflicted with Alzheimer’s by age 65, and nearly half by age 85, healthcare professionals of every specialty should know the 10 Warning Signs of Alzheimer’s and help educate patients and families so everyone can save time, money–and a fortune in Kleenex!

Jacqueline Marcell is the author of Elder Rage, a Book-of-the-Month Club selection receiving 400+ 5-Star Amazon reviews, 50+ endorsements (www.ElderRage.com/review.asp), required reading at numerous universities and considered for a film. Read an excerpt from the book here www.ElderRage.com/samplechapter.asp. She is also an international speaker on Alzheimer’s as well as breast cancer, which she survived after caring for her parents. She also speaks on caregiver stress and illness, and Alzheimer’s being termed ‘Type 3 Diabetes’, the Obesity Epidemic and Sugar Addiction.

(Pictures courtesy Jacqueline Marcell, mashomecare.com. Featured image used for representational purpose only)

Categories
Campaign

Why dementia awareness matters

It strikes elders and its progress is often silent. But one can live a quality life even with the disease.
by Echoing Healthy Ageing, Mumbai

September 21 is World Alzheimer’s day. Alzheimer’s is a type of dementia. There are about 3.7 million people in India living with Alzheimer’s or other type of dementias. While there are over 100 different types of dementia. Alzheimer’s disease is the most common type of dementia.

‘Dementia’ is a term that the doctor uses when someone has a number of problems with thinking and remembering. A sufferer of dementia typically faces problems that interfere with his or her ability to do things that they used to be able to manage in the past. Dementia mainly affects people over the age of 65 and the likelihood of the disease occurring increases with age.

Dealing with dementiaThe disease is incurable and progressive. A person with dementia slowly loses the ability to do things. The life expectancy of a person with dementia is unpredictable, and the disease can progress for up to around 10 years. The person who has it cannot control it.

Dementia can have a devastating effect on the person who has it, and on their family. Because it attacks the brain, it slowly leaves people lacking the ability to understand the world around them in the way they used to be able to. This is very difficult for people to properly understand and so the person with dementia is continuously asked to do things that they either struggle with, or that their brain can no longer do. This obviously leads to frustration, anger and often depression. A person with dementia will often retreat into themselves, or become enraged and inconsolable, until just a shell of the original person can be seen. Like a person drowning in deep water, the person with dementia will get tired and either sink under or scream and shout. These responses are usually thought to just be symptoms of Dementia, but actually it is people’s response to being interacted with in a way that does not take their brain damage properly into account.

How does one deal with it?

While there is no medicine, dementia-sensitive care can make an enormous difference. Dementia doesn’t have to be distressing – the person with dementia can have a fantastic life, and their family can have great relationships with them. It is crucial to help the person experiencing dementia to maintain control over as many areas of their life as possible, and encourage them to maximise their remaining abiilities. It is important to remember that the person with dementia has not lost their reason, instead they have lost the ability to process information, which is what we keep asking them to do.

All is not lost for a person struck by dementia – it is possible to lead a good quality life provided sufficient and appropriate care is provided to the person, and his or her condition and behaviour is seen in the context of the disorder. We at EHA have organised a seminar, ‘Dementia Sense’, which will provide insights on persons living with dementia and provide guidelines to create an environment that promotes well being for people living with dementia. (See details below). The approach to the disease cannot be a neutral, common sense one – when we use common sense around dementia, our strategies fail because we are not understanding the world from the person with dementia.

About the seminar:

The ‘Dementia Sense’ seminar will take place from September 19 to 21, 2013 and will give practical solutions to how to interact with one of the fastest growing epidemics in the world. Call Echoing Healthy Aging on 91586 56665 for venue details. Registration cost is Rs 499. Log on to www.echoinghealthyageing.com for more information. The speaker for the seminar is Shanta Gyanchand, a specialist dementia care wellbeing consultant and a UK-trained psychotherapist.

The Metrognome supports Alzheimer’s Awareness Month all through September 2013. Tell us about your organisation’s/individual efforts to fight this deadly disease and we will feature your story.

(Pictures courtesy EHA, www.thehindu.com)

Categories
Campaign

Mumbai’s observing World Alzheimer’s Month

A few Mumbai-based NGOs and colleges have partnered to organise a series of events and talks on Alzheimer’s this month.
by The Editors | editor@themetrognome.in

It is a disease that has ravaged millions of people over the years, and it continues its onward march every day, unchecked. Alzheimer’s is the most common form of dementia, and is known to affect a person’s memory, behaviour, learning and thinking patterns. According to alz.org, Alzheimer’s is the sixth leading cause of death in the United States alone.

In India, too, the numbers of those affected by this disease is worryingly high. Even more grim are recent findings that the disease, though traditionally known to strike those in advanced years, is beginning to show signs and symptoms even in those who are 40 or 50 years old.

September 21 is celebrated as World Alzheimer’s Day every year. In our city, the NGO ARDSI (Alzheimer’s & Related Disorders Society of India) Greater Mumbai chapter and Silver Innings have set aside all of September 2013 for Alzheimer’s awareness, and the two entities are jointly observing Alzheimer’s Month. “The partners for the initiative also include SVT College, YWCA Andheri, Pushpa MA Foundation, St. Thomas Orthodox Church, Helpage India , Nirmala Niketan College of Social Work and A1 Snehanjali Assisted Living Elder Care Home,” says Sailesh Mishra of Silver Innings. “Currently, the street plays are in progress, which are conducted in a very attractive manner. The plays address real-life case studies and have an instant connect with the audience. Also, Ganpati mandals have been very supportive as they want to address social causes. This way, we are helping to spread the message with religious and cultural programmes and events,” Sailesh adds.

Some pictures from the street plays:

The month-long initiative aims to spread awareness about dementia and Alzheimer’s, their effects on both the patient and families, caring for the sufferer, how to know if it’s Alzheimer’s, and various other topics. “This will be done through a series of street plays, interactive talks, memory walks and interaction between experts, students, senior citizens, medical professionals and whoever is interested in attending,” Sailesh explains. The events are free and open to all, but with prior registration.

Programme schedule:

September 12 to 28: Street plays for sensitisation and awareness at various locations and Ganpati mandals in Mumbai , Navi Mumbai and Thane District by Nirmala Niketan Students of Social work, in association with Helpage India and Silver Innings Foundation.

September 20, Friday : Interactive talk and street play at Asha Kiran Senior Citizens Facility, YWCA, near Navrang Cinema, Andheri (west), 11 am onwards.

September 21, Saturday : Memory walk and street play at Pushpa Ma Foundation, Dada Dadi Park, Veer Savarkar Udyan, LT Road, Borivali (west), 5 pm to 6.30 pm.

September 22, Sunday : Interactive talk and awareness campaign at St Thomas Orthodox Church, SV Road, Chincholi, Malad (west), 11 am to 12.30 noon. Contact Tony Varghese on 9820486605 for details.

September 27, Friday : Interactive talk and street play at A1 Snehanjali, Silver Innings Assisted Living Elder Care Home, D’silva Nagar, Nala village, Nalasopara (west), 4 pm to 5.30 pm. Contact  9323919145 for details.

September 28, Saturday : Sensitisation seminar ‘Understanding and respecting individuals with Alzheimer’s’, a lecture supported with skits, videos and a poster exhibition, by students of Family & Child Enrichment Center, Department of Human Development, Mini Auditorium, SVT College, SNDT University, Juhu, 2 pm to 4 pm. Contact 9820498738, 9821488790 for details.

Email ardsigreatermumbai@gmail.com; silverinnings@gmail.com or a1snehanjali@gmail.com for programme registration, or contact ARDSI Greater Mumbai Chapter/Silver Inning Foundation : 9987104233/ 9029000091 (Monday to Saturday, 10 am to 6 pm).

The Metrognome is proud to partner the Alzheimer’s Awareness Month. If you have a story or an insight about dementia and Alzheimer’s to share, do write to us as editor@themetrognome.in or tweet to us @MetrognomeIndia and we will feature your thoughts. 

(Pictures courtesy Silver Innings Foundation and www.ekantipur.com)

Exit mobile version