Care to remember: The challenges of caregiving for Alzheimer's patients

1. Sometime in 2005 – nobody's sure when – Savitri Joglekar strolled out of her home in Ratnagiri. She was found 10 years later in an Amritsar ashram, 2,000 km away from her village.

2. On the evening of December 12, 2008, Vijaya Patil was traced to Gorai jetty, 12 hours after she disappeared from her brother's flat in Bandra.

3. Twenty-eight days after going missing from a Shirdi Saibaba Temple, renowned musician Pandit Vithal Rao Sivpurkar breathed his last in a Hyderabad hospital. Just hours earlier, he had been found by a constable, raw-boned and unconscious near the Begumpet flyover. The prolific ghazal singer was the last musician in the Nizam's court.

Joglekar, Patil and Sivpurkar had a destination in mind when they wandered from their families. Their brains, driven by a vivid past, took them someplace familiar until they lost sense of time, place even identity – and became adrift in an alien present.

All three were diagnosed with Alzheimer's disease (AD), the most common form of dementia.

"It was the most nightmarish period of my life," remembers Vijaya Patil's daughter, journalist Jayashree Menon. In Satara at the time for a wedding, Menon rushed to Mumbai immediately after learning of her mum's disappearance. Search parties were formed, a missing person's report filed at Bandra Police Station and an alert scheduled to go in the next day's newspaper. Menon was wracked with dread. "I cried the whole way. My sister abroad was going to drop everything to take a flight back. Then, Bandra cops got a call from Gorai Police Station."

But Patil recalled nothing when a neighbour shed tears of relief the following morning. "Mom asked, 'Why's she crying? Did something happen or someone die?' And after overhearing me telling friends where we'd found her, she told our domestic help: 'My daughter's lying. I don't even know where Gorai is'."

In the years since her mother was diagnosed, Menon learnt the hard way what it takes to be caregiver to an AD patient. Spur of the moment outings are a no-no. Movie or dinner nights are possible only if a house help is around to tend to Patil. And even then, Menon is always worried.

Like Menon, Pi Communications' Managing Director Rakhshin Patel learned on the job after her nonagenarian father was diagnosed with AD 13 years ago – a considerably long time for someone with the condition. "He remembers me on good days, but otherwise thinks I'm a friend or sister. I tell him every day that I'm his daughter. Sometimes he says he was never married, so I have to inform him that he was," she says. Patel would remove the battery wire from her father's car every night for 10 years, lest he leave unexpectedly in the dark (even though the door would be locked), drive away and endanger himself.

Patel has a reliable support system in her driver, house help and caretakers while she's at work – a privilege very few have. But she's accepted certain compromises as routine post her father's diagnosis. Like shopping online to save time and keep close watch on him, and ensuring a sense of familiarity. "The worst is to take them out of their comfort zone. Sudden changes – even a home redesign – can disorient them," she stresses. "Also keep their routines going. I've done so for years. Most importantly, they must never be left alone or isolated."

Ties that bind
Beatrice Selgado is testament to the repercussions of isolation. A resident at Goregaon's St. Francis D'Assisi Bhavan home for the aged, which houses around 80 elderly people, she's one of the 15 here with Alzheimer's.
"She was alone after her husband died," informs Rev. Sr. Janet, who oversees Assisi Bhavan. Beatrice, she continues, was once found sitting on a bench talking to children while her apartment door was wide open. Concerned neighbours informed her son, who took her in before flying her down to Australia to stay with her daughter. "They couldn't manage the demands of caregiving, so they brought her here. From the time she lost her husband, Beatrice had no one to interact with. She has severe AD and can barely speak now."

Despite the dismal picture, Beatrice seems happy at Assisi Bhavan. The home has wide open spaces and a thriving sense of community: friendships are formed, each one's birthday is cause for celebration and there's regular song and dance. Caregivers are trained in handling patients – such as a chocolate-loving 'Mama' Catherine and Sister Dorothy – with great sensitivity. "You can't use logic or treat them like adults," says Sister Janet. "You can't get flustered even after repeating something 20 times because their short-term memory fails them. They teach you patience like no one can."

Poor judgement, mood swings and aggression, and an inability to tell time and do everyday tasks from bathing to changing clothes (in advanced stages) are other symptoms. The hands-on care, compromise and fortitude required makes AD a most demanding condition to deal with. Depression is not uncommon among caregivers, which is why doctors and social workers recommend that they don't overlook their own well-being or take time out to rejuvenate themselves.

Dignity Foundation's Dementia Day Care Centre, the only one of its kind in Mumbai, was set up to help give family caregivers a breather. It has a pick up and drop facility, cognitive stimulation activities, weekly yoga sessions, annual outings and lunch and tea services for patients every day between 11am-3:30pm. Vijaya Patil and Savitri Joglekar – who was untraceable for 10 years – are members here, along with eight other elderlies. One of them, a reticent Uttara Nagvekar, lights up when spoken to in Konkani and sings along whenever a song is played for her.

"It's less challenging managing them than the caretakers," smiles Jogeshwari Sawant, the centre's clinical psychologist and chief caregiver. "Many come with misconceptions about AD. They have to be reminded how to talk to patients." Their continuity, she adds, is also of prime importance. Since an established comfort zone and rapport is crucial for an AD patient's well-being, Sawant can't afford to change caretakers often, as doing so could make patients insecure or jittery. Senior citizens also have to be taken to the washroom every hour to prevent incontinence. Handling patients' spatial disorientation and outbursts is a skill unto itself. "Most importantly," she points out, "unlike people suffering from other conditions, those with AD don't even know or register that they have Alzheimer's."

Crippling lack of awareness
There was a time dementia diagnosis within a family would be covered up. But with families getting smaller and more independent, AD is becoming relatively more talked about, feels Dr Shirish Hastak, consultant neurologist and group director, neurology at Wockhardt Hospitals, Mumbai Central. There's a gradual understanding that AD is not synonymous with age-associated impairment or what's dismissed as 'senility'. Even then, he adds, people come with their own ideas about the condition.

"Many feel patients pretend not to recollect things. They ask, 'He remembered this just now, how can he forget so quickly?' Or 'Why don't you tell the doctor what's wrong with you?' They have to be told that AD causes loss of insight. Some even ask if it's a psychiatric disorder," Hastak says.

Exacerbating the situation is the fact that primary health centres in small towns and rural India are ill-equipped to detect dementia. There's a dire need for public-private partnership and for civic bodies and state governments to make AD a focal issue in health policy planning, says Vidya Shenoy, secretary of the Mumbai chapter of Alzheimer's and Related Disorders Society of India (ARDSI).

India has about four million registered AD cases now. This is estimated to reach seven million by 2020 and 13 million by 2050, she adds: "We have to remember those who don't remember. It's shameful that our financial capital has few facilities for dementia patients such as daycare centres or palliative care homes." There's also no ready data on the breakup of rural and urban AD cases.

Forget rural areas, urban India itself is shorn of bureaus where caregivers are specially trained in catering to Alzheimer's patients. Rakhshin Patel talks of the time a self-described 'personal home care service provider' for the elderly did a near-volte face when she asked for someone to care for her father. "I kept calling for a month but no one turned up. They finally sent someone who didn't even know what dementia, leave alone AD, was."
What, then, of those who can't afford 24x7 or outside help? Families in slums, chawls and other tight-knit communities, feels Shenoy, are better equipped to take turns or have friends or relatives care for someone with AD, compared to nuclear families. ARDSI Mumbai has trained some caregivers and maintains records after asking for ID and photo proof and other details. The response, says Shenoy, has been overwhelming.

Cinematic interventions
Kerala seems to be one of the few state governments that takes AD seriously. It funds several awareness initiatives and services like daycare centres. An example of the better awareness here is the critically-acclaimed Malayalam film Thanmathra (2005), which showed Alzheimer's in an empathetic light.

Veteran actor and psychiatrist Dr Mohan Agashe, who was part of the government healthcare system for 35 years, fought to change mental health policy and create district mental health centres in Maharashtra. Today, he's doing his bit to boost AD awareness.

In Astu: So Be It, he stars as AD-afflicted retired Sanskrit professor Dr Chakrapani Shastri. The Marathi film, screened in Harvard University and the University of San Diego, received accolades there for its nuanced portrayal of the patient and caregivers affected by the disease. Agashe pooled his life savings into Astu… and is now looking at a probable September release in Mumbai and surrounding areas.

The actor wants to rope in psychologists and social workers for interactive post-screening sessions so that viewers can be better informed about the disease. "I didn't try to act like someone with Alzheimer's since I don't have the experience of being an AD patient," says Agashe, when asked if his medical experience helped greatly in essaying the role. "What I did was become a child, because that's how you need to treat AD patients."

His character of Dr. Shastri is imbued with subtext: how one looks at him, how he looks at different people and reacts to different situations, how he moves. Indeed, understanding AD patients is all about understanding their non-verbal cues.

Learning a new language
People with Alzheimer's may struggle to express themselves or comprehend some situations. But they can be remarkably perceptive and pick up subtle differences in tone and body language. Instead of pushing them to understand what's being said, caregivers should foresee and decipher patients' movements. Aggression or violent behaviour is mostly due to frustration over not being understood.

"They may sometimes spit food out after each bite because they have a toothache. Or hold their stomachs, but not be able to communicate what's wrong with them," informs Shenoy. "You have to think out of the box and watch their expressions, qualify your thought process in understanding them. Just as you would for a child."
Rakhshin Patel and Jayashree Menon learned to pick up such cues after much trial and error.

Patel recollects arguments when she'd ask her father to have a bath but he'd resist, saying he'd already done so. "I learnt to be creative. I'd tell him the tiles were dry, the bucket was full, or figure out another way to get him in the shower," she explains. "I wish guidelines on how to manage simple daily activities were outlined."

Keeping AD patients mentally occupied is most important, says Wockhardt's Dr Hastak. Apart from engaging them with puzzles, books and newspapers, one can give them coins or beads of different sizes and ask them to separate and sort the lots. They can also participate in some chores. But never give them anything sharp, as they can inadvertently harm themselves, says Vidya Shenoy. "AD patients must be kept busy so they don't go in a silent zone. Give them a sense of propriety. Make them feel wanted."

Alzheimer's has no cure. But with the right kind of care, mental exercise, physical activity (yoga, walks, guided swimming) and rest, AD patients can still live a life of dignity and be part of society rather than being relegated to its fringes.

And while Thanmathra and Astu: So Be It get it right, Balaji Telefilm's ongoing teleserial Itna Karo Na Mujhe Pyaar uses a character with Alzheimer's as comic relief. Maybe we can start by overhauling such portrayals and showing patients in sensitive light instead of resorting to crassness.

(Some patients' names have been changed)


For caregiver assistance, contact
Dignity Foundation Dementia Care Centre:
(022) 6513 3848 | Helpline: (022) 6138 1111
ARDSI Mumbai: (022) 2374 2479

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Within gender, more women than men get Alzheimer's: Rammohan Rao

Rammohan Rao, PhD., is Associate Research Professor at the Buck Institute for Research on Aging in Novato, California – USA's first independent institute dedicated solely to research on ageing and age-related disease. He is also a member of National Ayurvedic Medical Association, and believes monotherapy for Alzheimer's management is a failure. Edited excerpts of an e-mail interview:


1. Why aren't trials on therapeutic programs focusing on consumption of herbs, improved diets, sleep and exercise and combination therapies being undertaken?
We have witnessed the greatest failure of biomedical therapeutics development for neurodegenerative diseases. Hundreds of clinical trials have been conducted for AD without success. This has led some to question whether the monotherapuetic approach is an optimal one. Genetic and biochemical research studies from our laboratory and others reveal an extensive network of molecular interactions involved in AD pathogenesis, suggesting that a combinatorial approach, rather than a single target-based approach, may be potentially more effective for the treatment of memory decline due to Alzheimer's.
Since there are not many suitable drugs in the market for AD and until a combination therapy becomes successful, non-pharmacological interventions need to be recommended based on evidence-based research studies. These include:

Exercise: Includes both mental and physical exercise. There is increasing evidence that exercises of all forms support healthy aging. Exercises are helpful for neurological, cardiovascular, respiratory and musculoskeletal systems, among others. Regular exercise has been shown to improve cognitive function among older people.
The brain is continually growing and rewiring its connections in response to mental stimulation. Our brain grows stronger from use and from being challenged in the same way that muscles grow stronger from physical exercise. Brain plasticity refers to its capacity to rewire itself through learning, experience and mental exercise. 'Use it or lose it' applies to neural pathways and connections in our brains as well.

Sleep: Several research studies (most on elderly humans) have shown the importance of sleep. Elderly patients with chronic sleep apnea often have cognitive difficulties. Individuals with habitual sleep duration suffer from cognitive impairments including dementia, independent of other risk factors.

Herbs: Studies using herbals that have been done on humans use isolated preparations of herbs that have several limitations, so further phase trials can't be undertaken. The other problems are that (1) they have a non-commercial value, (2) safety and efficacy issues are of concern, (3) identification and isolation of active principles are complicated, and (4) drug agencies strongly limit the use of herbs for human phase trials. Whatever studies are done have either focused on using herbs for in vitro research or been restricted to animal models.

2. Much is said about turmeric's potential for AD management. Does it simply arrest, or can it even regress plaque progression (an out come of AD) in the brain?
Most research on turmeric and AD comes from animal models. In addition to arresting plaque formation and progression, it also dissolves the plaque. Additionally, it brings down neuroinflammation – one of the hallmarks of AD.

3. By and large, which sex witnesses more instances of Alzheimer's? For e.g., Parkinson's is reportedly more common in men than women.
While recent findings suggest that biological, genetic and even cultural influences may play major roles in AD, the main risk factors are age and gender. Within gender, more women than men get Alzheimer's, in part because women tend to live longer than men and the chances of developing Alzheimer's increases with age. New studies suggest there may be other reasons as well. Age and menopause, coupled with subsequent loss of estrogen, puts women at more risk of developing AD. Research also has found that the risks of dementia increase in women whose ovaries are removed. Several studies are under way to discover drugs that promote estrogen activity and restore cognition in women going through menopause. Furthermore, differences in risk for heart disease may also explain why more women tend to develop AD compared to men. Men are more likely to die of chronic heart disease, high blood pressure or diabetes before they would develop AD. Women have a higher risk of depression in their lifetimes compared to men, and there is a strong link between depression and dementia.

4. Can genes be a catalyst for the onset and progression of Alzheimer's?
The risk of getting AD is 10 times higher for those who have two copies of the ApoE4 gene. Several gene mutations can also increase the risk of AD. But gene mutations account for only 1-5% of total AD cases. Lifestyle and environment play a larger role in sporadic AD.

5. You've said out that dementia has been mentioned in ancient Ayurvedic texts. Is there evidence of pre-existing knowledge of AD, in particular?
Older Ayurvedic texts including Charaka Samhita, Sushruta Samhita and Ashtanga Hridayam all refer to a mental condition called PranaVrtta Samana Vatavyadhi. The symptoms of the disease include phalakam (plaques), acchadanam (tangles), manda buddhi (failure of intellect), Anabhijno (loss of sense of self), Buddhihina (loss of cognition) etc. All these point to a disease similar to Alzheimer's.

6. A strict diet and therapies like Shirodhara and full-body massages – which you recommend – may not be practically feasible for people to follow every day. Any alternatives?
AD or even age-associated memory loss can be prevented by 1) Physical and mental activity (2) Being socially active (4) A healthy diet (5) Leading a stress-free life and (6) Sleeping well.
Many scientific studies indicate benefits of Yoga in combating stress, keeping one physically and mentally stable and active, improving digestive capacity and aiding sleeping – all these combat cognitive loss. In a recent study involving patients with early signs of AD, Yoga and meditation increased functional connectivity in the areas involved in memory and also decreased early degenerative changes typically seen in these regions. This suggests that Yoga and meditation have a positive impact on the regions of the brain related to AD.
Anyone can follow the above regimen or therapies even in a home setting.

7. There's great awareness about Alzheimer's in the U.S. compared to India. Have you observed major differences in how AD patients are cared for in both countries?
Thanks to various support groups, senior homes, group meetings, and other AD-related organisations, people in the US are more aware about the disease. Even if proper treatment is lacking, there are centers where 24x7 care is available for people with AD. Unfortunately awareness is very low in India. Indians are more worried about tropical diseases, infections and more recently, metabolic diseases. I firmly believe that my father and his sister may have suffered from AD, but they never received suitable treatment options or suggestions about lifestyle changes from their neurologists.

8. How do you propose stakeholders – government, social workers, NGOs, etc. – make Indians more aware about Alzheimer's and dementia in general?
As the median age in India goes up and people live longer, we will see more AD cases. Agreed, there is no cure or suitable treatment options, but we can bring about a transformation in the mindsets as soon as people cross 40. Lifestyle interventions, if implemented early, will pave the way for aging devoid of age-associated health issues including AD. Physicians need to recognise the various forms of dementia and advise patients suitably. Government agencies (ICMR and AYUSH) must put in additional funds for serious research in these areas. NGO and social workers need to identify AD victims and provide a suitable setting for comprehensive care and support. This requires concerted efforts from all.