Caring for individuals with dementia is a complex task under any circumstances. A panel discussion featuring experts in dementia care highlighted the unique challenges faced by caregivers and the individuals they support. While this was recorded during the COVID-19 pandemic, the insights and learnings are useful for all families dealing with challenges of dementia care.
Panelists
The discussion included Dr. Sridhar Vaitheswaran, a consultant psychiatrist and head of DEMCARES at the SCARF Schizophrenia Research Foundation in Chennai; Mangala Joglekar, a social worker who runs a memory clinic at Dinanath Mangeshkar Hospital in Pune; and Gomathi Radhakrishnan, a former caregiver who actively supports fellow caregivers through Demcares.
Understanding Dementia
Dr. Sridhar explained that dementia is an umbrella term describing a collection of conditions characterized by memory loss and impaired cognitive functions such as language, recognition, ability to organize oneself and do activities which our brain helps us to do. Dementia is a generic term which describes a chronic degenerative process in the brain. He noted that Alzheimer's disease is the most common type, but there are others, including vascular dementia and dementia related to Parkinson's disease. Importantly, he pointed out that early diagnosis can help manage the illness and mitigate complications, similar to how conditions like diabetes and hypertension are treated. Dementia is a complex condition that significantly impacts both patients and their families. Understanding its nuances can greatly enhance caregiving experiences.
Diagnosis and Acceptance of Dementia
Gomathi Radhakrishnan shared her experience of caring for her mother-in-law, who was diagnosed with Alzheimer's at age 78. She cared for her from 2008 and until the time she passed away to 2018. Dr. Sridhar emphasized that age is a crucial risk factor for dementia, with only 5% of individuals over 65 diagnosed with the condition. This statistic highlights that while age increases risk, the majority of older adults will not develop dementia. There are many conditions which can mimic dementia. There are many problems which can present with memory problems in an elderly person and it's very important to rule out some common reversible causes for these memory problems.
Gomathi recounts the emotional turmoil that arose when her mother-in-law displayed unexpected behaviours, such as forgetting she had already eaten food. It was dismissed as aging or recent shock of her husband passing away. But one day they were shocked to see her trying to drink a bottle of phenol. This made us seek doctor’s advice and we found she had Alzheimer’s.
Mangala Joglekar added that accepting a dementia diagnosis can be one of the first hurdles for families. Caregivers often find themselves unprepared and overwhelmed, facing several challenges such as behavioural changes, aggression, sleep disturbances, wandering, hallucinations etc. These challenges can escalate stress and strain relationships within families, particularly when siblings share caregiving duties and they do not work as a team.
The Impact of COVID-19
During the pandemic, dementia care challenges became exacerbated. Dr. Sridhar addressed the heightened vulnerability of dementia patients to COVID-19. Many dementia patients also suffer from coexisting health issues, such as diabetes and heart disease, complicating their overall health and increasing their risk of severe complications from the virus.
Dr. Sridhar outlined two primary categories of issues that arose during this period. First, caregivers faced heightened difficulties in managing daily care routines, especially regarding protecting their loved ones from COVID-19. Many individuals with dementia do not fully understand the importance of safety measures like wearing masks, leading to friction and anxiety within the household. Additionally, if a person with dementia contracted COVID-19, the implications could be severe. Healthcare facilities were often ill-equipped to manage dementia patients, leading to concerns about separation from family members during hospitalization.
Mangala emphasized the disruption of routines due to lockdowns, which resulted in increased agitation among dementia patients. Caregivers also experienced significant emotional strain, grappling with feelings of guilt, isolation, and a lack of support. The isolation brought on by the pandemic often left caregivers without the necessary support systems. They frequently found themselves in a cycle of stress and burnout, struggling to care for their loved ones while neglecting their own well-being. The discussion concluded with a sense of urgency for caregivers to seek support, whether through support groups or professional help, and the importance of raising awareness about the complexities of dementia care—especially during times of crisis. The challenges of home-based dementia care were magnified during the COVID-19 pandemic, revealing the need for increased understanding, support, and resources for both caregivers and patients.
Treatment of Dementia
Dr Sridhar clarifies that “nothing can be done for dementia” is a myth and it is not true. There are so many things which we can do for someone with dementia. Like diabetes or hypertension, there is no permanent cure, or permanent treatment. It doesn't mean that people shouldn't get their diagnosis of diabetes or hypertension. Similarly, for someone with dementia, if you're able to identify the illness early on, you can prevent a lot of complications later on in life. The other important opportunity it provides the family and also the person having dementia is giving them an understanding of what is happening to them and what's going on around them. It gives them a sense of control over what is happening in their lives and a direction about what they should do in the future.
Accessing appropriate sources of help is important to slow down the disease progression and prevent a lot of complications like behavioural problems, agitation, aggression, sleeplessness, etc that occur as dementia advances. Also, we can provide a lot of psychosocial interventions or non -medical interventions to reduce caregiver distress. Lastly it gives people an opportunity to participate in research and improve the care and potential therapies for dementia in the long term.
Dr. Sridhar explained that restlessness can often stem from unrecognized physical problems, such as dehydration or infections. He outlined three categories of treatments for dementia:
- Cognitive Enhancers: Medications that improve memory and cognitive function, particularly in the early to moderate stages of dementia.
- Behavioural Symptom Management: Addressing issues like agitation and restlessness, often requiring careful assessment to determine underlying causes.
- General Health Management: Ensuring other health conditions are treated, as neglecting these can exacerbate behavioural issues.
If the patient complains of symptoms, get them checked out at the earliest. Don't ignore the symptoms or dismiss the symptoms as, attention seeking and that itself is an important issue that needs to be dealt with if they are bringing out physical symptoms or somatic symptoms as a means of getting attention then actually tells a lot. There are things which can be put in place to help this patient. Also avoid using placebos to placate the patient without medical consult.
Routine use of medical use of sleeping pills for someone with dementia is not advisable because it can cause daytime drowsiness, and risk of falls.
Meaningful Activities for Dementia Patients
Dementia care is distinct from general elder care due to the profound behavioural changes and emotional stress involved.
There are lots of creative strategies to keep patients engaged. Gomathi mentioned her mother-in-law's love for singing, playing cards, and cooking, which helped maintain her happiness and connection to family. Mangala added that activities should be tailored to the individual’s interests, whether that involves puzzles, colouring, drawing, or light household chores.
Dr. Sridhar encouraged caregivers to think outside the box and involve patients in activities that stimulate multiple senses, such as cooking or gardening. Engaging in shared activities can foster connection and enjoyment for both the caregiver and the patient.
When discussing patients with mobility issues, caregivers sought advice on keeping them active. Dr. Sridhar suggested using adaptive equipment and consulting physiotherapists for appropriate exercises that could be done while seated or lying down. Mangala emphasized the importance of tailoring activities to each patient’s interests, whether through games, language activities, or music. Choose activities based on the person's interest and their ability,
Concerns about safety during activities, especially in the kitchen, were raised and how supervision is key to prevent accidents.
Music emerged as a favourite tool for engagement. Singing or playing games related to song lyrics or themes were always joyful. Music activities in any form are extremely enjoyable to the patients. They are easy to do and you can find variations in these activities.
Once you start doing something, then you definitely get different types of ideas and you can change the activity. Try activities that you can do as a whole family, so patient doe not think of it as a chore.
Caregiver Burden & Support
Dementia caregiving is the most difficult form of caregiving for the elderly; every day is a battle. The numerous care responsibilities, stress and strain can and do affect the physical and mental health of the caregiver. With time, these challenges continue to pile up. So, the caregivers go on facing the challenges all throughout the caregiving journey.
Caregiver sharing is important because often caregivers don't recognize the value of it. Gomathi recalls how joining the caregiver support group came as a blessing because she didn't know how to cope and as a family felt inadequate. “We didn't know what was coming day in and day out. So when I met many caregivers and the training that we got for caregivers was extremely useful and very helpful.”
Her first training was under Dr. Sridhar, who explained how patients with dementia feel, how their memory works and what happens to them. In the group, once monthly they would meet and cry their heart out. “We felt that we are not alone, we are supported and then we would contact each other, share our issues, find solutions etc. For example, when my mother-in-law developed incontinence, we did not know what to do to keep her diaper on. Someone suggested we try a pinafore over the diaper so that it is secured from behind so that she cannot remove it. This idea came from another caregiver who had experienced this, it was immensely beneficial for us.” This support group becomes their alternate family, because many of them lose contact with their own family members and have no time to socialize.
With the rise of virtual support groups during the COVID-19 pandemic, caregivers are finding new ways to connect and share experiences. Besides emotional help, there is a lot of information and resource sharing that is helpful. Mangala leads a weekly WhatsApp group where caregivers engage in fun activities and share insights, offering a much-needed break from their routine stressors.
Conclusion
Caring for someone with dementia is a multifaceted challenge that requires patience, creativity, and a supportive community. By leveraging the insights of caregivers and healthcare professionals, families can enhance their approach to care, ensuring that dementia patients maintain a sense of purpose and joy in their daily lives. With continued innovation and support, both caregivers and patients can navigate this journey together, fostering meaningful connections and enriching experiences.
DEMCARES dementia care by SCARF started in 2016, with the aim to help people with dementia and their caregivers, so as to receive the most evidence -based health intervention that can be made available in our country. They have a memory clinic, offer cognitive stimulation therapy and are testing specific interventions for caregivers which are adapted for India. Along with an active support group of caregivers, they are also involved in research.
The memory clinic in Dinanath Mangeshkar Hospital, Pune runs under the neurology department since 2010. Additionally, they started the Alzheimer's support group such that both of these setups, have been working for the dementia community. They have awareness programs, testing programs for the patients as well as for the caregivers, home visits and training programs. They also have memory clubs for brain fitness that normal citizens can use along with the dementia community.
