Living with Dementia
One the eve of World Alzheimer day which is observed on21st September each year, I wanted to take an opportunity to write about dementia as we try to help our patients and caregivers. This year’s theme is “Ask About dementia “and going with the theme I have tried to answer some common questions about dementia. Dementia as we know is a group of symptoms affecting memory, thinking and social abilities. In the context of Kashmir and Kashmiri language, traditional narratives and folklore do contain references to age-related forgetfulness and behavioral changes in the elderly. But i find paucity of words which exactly describe dementia in Kashmiri, and to me this is one of the reasons as to why there is a mystery and lack of acceptance of the diagnosis of dementia in our society. Words, like breithun do encompass some of its meaning but carry a dismissive and even a mocking tone. Other words like Dimaage Zawal, Demagee Abtaree and Demagee kharabee have been proposed but need wider acceptance.
The estimated dementia prevalence for adults aged 60 and above in Kashmir is 11 % and is higher than the national figure and various reasons have been suggested for that. Not to forget that with increasing age and increasing incidence of hypertension and Diabetes mellitus overall prevalence of dementia is bound to increase.
What are symptoms of dementia?
The normal and proportionate decrease in cognitive faculties with ageing does not constitute dementia. Common symptoms include memory loss, which is usually noticed by someone else, problems in communicating or finding words and trouble in negotiating places, such as getting lost while driving. Problems with reasoning or problem-solving and trouble while performing complex tasks like cooking food and difficulty in planning are also important symptoms. They may also have some psychological symptoms like personality changes, depression, anxiety, agitation, behavior that doesn’t fit the situation, being suspicious and hallucinations.
Causes of Dementia? Dementia is caused by damage to or loss of nerve cells and their connections in the brain. Practically speaking there are broadly two categories of dementia viz: progressive or degenerative dementias and reversible dementias. Degenerative dementias are progressive and usually worsen over time and aren’t reversible and include Alziemer’s disease, frontotemporal dementia to name a few. Reversible dementias are a small but very important set of conditions to be ruled out as most are curable and any effort to look for them is worth the universe for me. These include brain infections and inflammations, deficiency diseases, conditions causing abnormal buildup of fluid in the cavities in the brain, blood collections outside brain within the skull, and last of all immune mediated diseases of brain.
Treatment of degenerative dementia:
Degenerative dementias cannot be cured, but medicines and supportive care can help manage some of the problems. Neurologists may prescribe medicines such as donepezil, rivastigmine, galantamine, or memantine, which can sometimes improve memory, thinking, and daily activities for a while in a subset of patients. Treating other health issues like depression, anxiety, poor sleep, or hearing and vision problems can also make life easier.
Myths and Misconceptions
There are many myths and misconceptions surrounding dementia, like for example, dementia is a normal part of aging. On the contrary while mild memory loss can happen with age, dementia is not a normal or inevitable part of aging. It is caused by diseases that damage the brain, such as Alzheimer’s disease.
Similarly other myth is that dementia only affects memory, while actually dementia can affect many cognitive abilities: including reasoning, judgment, language, mood, and behavior and not just memory. Another issue which often crosses minds of caregivers is how come the patient remembers everything of his yesteryears and forgets whether he took his lunch on a given day. The answer can be explained by bookshelf analogy where the memories are akin to books on a book shelf in a rack. The older memories - like childhood, marriage, or early life events - are stored on the bottom shelves. But the newer memories, like what they ate today or where they kept their keys, are on the top shelves. And when dementia rocks the bookcase… the ones at the top fall out first.
Dos and don’ts as a caregiver of dementia!
Every time a caregiver enters the room of the dementia patient, he / she should announce himself/herself. Like “Asalamalikum daddy – it is me, Hilal.” Try to avoid asking questions like, do you know who I am or what date it is today? This gives anxiety to the patient and is not of any help. Accept the reality that your loved one has dementia which is giving him/her cognitive issues and don’t act frustrated if he mixes up names, events, or places. Avoid confronting, arguing or correcting the feeling which he/ she is harboring and if your patient sometimes thinks wrongly that his spouse is still alive, or his sister visits her, let him/her believe those things as he/she can be happier by these thoughts. In case of feeding difficulty, switch to foods which are handled easily.
Don’t treat him/her like a child and talk to him like the adult which he/she is, further avoid talk about him as if he is not in the room. Help him to enjoy the things that he has always enjoyed e.g., help him to exercise, read, and visit friends. Encourage your patient to tell you a story from past, sit with him and listen. This, kath kath karein, was an important habit in our culture as to how we treated our elderly and is worth the effort it takes.
Sometimes your patient becomes agitated, take the time to figure out what is bothering him and treat him/her the way that you would want to be treated. Ensure that there are plenty of snacks at his access as he/she may have trouble explaining what he needs and in fact might not eat out of anger. Make sure your patient can listen to his favorite Quran Surah, TV programme, sports or old song. Try to include them in parties and family gatherings as they still like receiving hugs or handshakes.
Coping Strategies for Families and Caregivers
Families and caregivers often face significant challenges as the condition progresses and it can usually be emotionally, physically, and mentally demanding. Try to establish a routine and maintain consistency in daily activities like meals, bathing, and bedtime. This reduces confusion and anxiety in the person with dementia. Work on your communication skills and speak clearly, slowly and calmly, use simple sentences and avoid overwhelming information. Allow extra time for the person to process and respond. Caregivers should practice self-care to avoid burnout and take time for rest, hobbies, exercise, and relaxation. Don’t feel guilty for taking breaks, as your well-being is of prime importance.
Prevention of Dementia
One should start with by steps that protect heart and blood vessel health by controlling blood pressure, sugar, cholesterol, and avoiding smoking and excess alcohol. These are complimented by regular physical activity. A quality sleep and good management of stress, depression, and correction of hearing or vision loss further lower risk. Keeping the brain engaged through learning, puzzles, reading, and social connections builds “cognitive reserve” that delays decline. I usually tell my patients to try something new and learn something new to bulwark their mind. Like try to learn a new language, try a new game, try experimenting in kitchen and make new recipes. In fact, in one published study, drivers were found to be have less incidence of dementia and argument being that their mind had lot of visuospatial training during driving. Preventing head injuries and managing chronic conditions like diabetes, thyroid disease, and vitamin deficiencies also play a role. A Mediterranean or MIND-style diet rich in leafy greens, berries, nuts, whole grains, legumes, fish, and olive oil has some evidence for protecting memory.
Creating a Dementia-Friendly Environment
First of all, Simplify the living space, remove clutter to reduce confusion and hazards. Keep only essential furniture and objects in each room. Avoid busy patterns on carpets, curtains, or upholstery. Ensure good and natural light wherever possible to support sleep-wake cycles. Avoid harsh lighting or shadows, which can cause confusion or fear. Use nightlights in hallways and bathrooms. Avoid high-gloss finishes, as they can create confusing reflections. Use clear signage and labels on doors (e.g., “Toilet,” “Kitchen”) with both words and pictures. Choose soothing, soft, calm colors (like blue, green, or beige) which promote relaxation. Try contrast between walls and furniture to make objects easier to see. Reduce the noise and distractions and turn off TVs or radios not in use. Use soft furnishings (curtains, rugs) to absorb sound. Install grab bars in bathrooms and handrails on stairs. Remove tripping hazards (like loose rugs or wires).
If possible, avoid relocating residence in a dementia patient. Relocating leads to increased confusion, anxiety, and disorientation, a reaction known as relocation stress syndrome. People with dementia rely heavily on consistency to feel secure, and any environmental change can overwhelm their ability to adapt. This as aptly described in our culture as jai phurre. And if that is not possible then gradual introduction to the new setting, recreating aspects of the old environment (same bedspread, chairs, photographs) might help.
Community Support: We should see dementia not only from perspective of patient and caregiver but also from that of society as a whole. Many dementia patients don’t have family support and even if present is exhausted. Such facilities are already available in western societies and include, Adult Day Care Centers, Home Care Services, and Respite Care centers. We as a society need to look inwards and see requirements of our patients and find what type of facility will be culturally and economically feasible and find ways to establish them. In Jammu & Kashmir, national initiatives can be implemented through district hospitals, medical colleges, supplemented by local healthcare services and occasional awareness activities by NGOs and community groups. Though this needs cohesion between all stake holders.
Dr Sheikh Hilal Ahmad, Assistant professor, Department of Neurology Superspeciality Hospital.
