Dementia is a syndrome in which there is deterioration in memory, thinking, behaviour, language,judgment and the ability to perform everyday activities. It is a chronic and progressive syndrome (a collection of symptoms) that usually brings about a deterioration of cognitive and emotional abilities, beyond what is expected of normal ageing. Even though dementia is more common among older people, it is not a normal part of the process of ageing. It is a syndrome that instils us with fear, worry, apprehension and sometimes, panic. It makes us ask difficult questions — will it be me or a loved one? Will I be the caregiver for a loved one? When will it happen? What shall I do? These questions remain unanswered for over 115 years, since dementia was first diagnosed.
Sadly, the disease physically, psychologically, socially and economically, impacts not only the people who develop it, but also their caregivers, family, and society at large. Over 50 million people have dementia globally, and the number seems to be going up by 10 million every year. While we do not yet know the percentage of seniors affected by dementia in India (somewhere in the bracket of 1% to 5% of our population), it would be safe to conclude that with increased longevity, the number of cases is also likely to go up. This, in turn, indicates that dementia is likely to become one of the major
causes of disability and dependency among the older age group. Clinically, there are around 400 different types of dementia.The commonest, however, is Alzheimer’s (around 60% to 70%), followed by vascular and early onset (frontotemporal) dementia. A group of diseases including Down’s Syndrome, Huntington’s, Parkinson’s HIV, traumatic brain injury, immune system disorders and metabolic diseases also contribute to dementia. The boundaries between the different forms of dementia are indistinct, and the mixed forms predominate the clinical findings. Dementia progresses over three broadly categorised stages. However, they merge and shift into each other constantly and often, seamlessly. Consequently, the approach for care has to be ever-changing and dynamic.
The early stage of dementia is often overlooked because the onset is gradual. The symptoms are noticed by the spouse or near family members but are so embedded in the normal behaviour of the individual that it is difficult to pinpoint when it all started. There may be forgetfulness, losing track of time, feeling lost in familiar places and sudden bouts of anger.
As dementia progresses to the middle stage, the signs and symptoms become more apparent and restricting. These include forgetting recent events, names, feeling lost at home, wandering aimlessly, having increasing difficulty with communication, repeating tasks, questions and statements, with signs of aggression and docility at random intervals. Older adults may start needing help with personal care during this stage.
The late stage of dementia involves total dependence and inactivity. Memory disturbances are serious, and the physical signs and symptoms become quite obvious. The patient becomes unaware of time and place, experiences, and shows signs of increasing cognitive deficits, needs assistance for self-care, mobility, and frequent behavioural changes take place.
Tips for caregivers
Always remember that if you are caring for someone with Alzheimer’s disease or related dementia, your role in managing their daily tasks will increase as the disease progresses. It helps to remember that you are dealing with the physical, biological, neurological and psychological aspects of a human being, not just a disease. Remember that you can slow down the momentum by taking care of the risk
factors or underlying disease with a healthy diet and exercise. Keep in mind that dementia has multiple symptoms, with no prognostic comparisons and similar illness trajectories. Know that patients living in a community can thrive and live longer if
Reduce frustration and agitation in the patient by:
Establishing a routine for all daily functions with flexibility for spontaneous activities on difficult days.
Anticipating the time taken for tasks, which may increase or decrease on different days. Engaging with the person by giving simple instructions and encouraging them to be independent. Planning and asking them to help you with your tasks to give them a sense of purpose and accomplishment. Letting them make simple choices such as what they would like to wear, eat, or which exercise they wish to take up. Limiting their napping time and reducing distractions while giving instructions. Helping them (especially during the sundowning) by being calm, gentle and supportive.
As one stage progresses into another over time, a person with dementia will
become more dependent. To reduce their frustration, stay flexible and adapt your routine and expectations as per their requirement. Create a safe environment for the patient as their risk of injury increases, along with their impaired judgment and diminished problem-solving skills. Avoid using slippery rugs, and be wary of extension cords and any clutter that could cause falls. Install handrails or grab bars in critical areas. Lock cabinets that contain anything potentially dangerous, such as
medicine, alcohol, toxic cleaning substances, and dangerous equipment. Monitor the temperature of their bathing water to avoid injuries; keep an eye on matches (especially if the patient is a smoker) to minimise kitchen fires or any other potential fire hazards.
Focus on individual care:
Each person with dementia will experience its symptoms and progression differently. Tailor these
practical tips to your patients’ individual needs. Nurture the motor skills of the patient by involving them in activities such as knitting, gardening, woodwork, painting and playing a musical instrument.
These soothe the patient and are the last physical abilities to diminish. Working on the patient’s motor skills also keeps them active for a longer period. Apps and wearable devices are available to monitor the medication and safety of seniors.
Caregiver’s mental and physical health:
As your patient’s condition deteriorates slowly but surely, take care of your overall health.
Take time to reflect, eat well, exercise, meditate or do relaxation exercises regularly.
Find a buddy so you can share your feelings and emotions with them.
Be kind to yourself.
It is common for caregivers to feel guilt, talk to your buddy about it.
Talk to your family and the patient’s family regularly.
Do the best you can.