"Hatao khudayo – taeth tchu saarni laayan!"
It started just a few months ago and quickly changed their lives. Gulkak's mild-mannered mother's transformation came as a shock to everyone.
For years, she was known in the village as a quiet and caring woman – someone who was consulted by neighbors for her sage advice. But her doctor's two words had changed everything: Alzheimer's Disease. Simple activities of daily living (ADLs) were now so hard to accomplish. It was almost impossible to get her to take a bath. She became paranoid and accused Gulkak of stealing her money. She kept trying to escape from the house and when Gulkak and his wife tried to stop her for fear of her safety, she would hit them. She screamed at them for keeping her prisoner. But in reality, they were all imprisoned by an unfortunate disease and an ineffective and destructive approach towards handling it.
Alzheimer's is the most common of the ten forms of Dementia. A progressive and irreversible disease, it causes the brain to gradually shrink to almost one-third its original size. Critical parts of the brain disappear over time and as a result, the individuals become a shadow of who they once were. They are robbed of their memories, their ability to communicate, to complete basic tasks and very often – and in Gulkak's mother's case – they lose control of their emotions. A common phenomenon experienced by individuals living with dementia is 'sundowner's syndrome'. As the name suggests, certain behaviors emerge around sunset or sundown. Women typically become excessively emotional and may start weeping for no apparent reason. Men, on the other hand, may become increasingly physically/verbally aggressive or sexually inappropriate. In both cases, the individual's behavior becomes unpredictable and very difficult to manage.
As the Manager of the Green House® Residences at Brooks Rehabilitation in Florida, USA, I saw many cases like Gulkak's mother. The Green Houses are luxury Assisted Living Facilities developed based on the best model in the industry for the care of individuals living with dementia. The facility provides 24×7 care to residents – which includes assistance by Certified Nursing Assistants with activities of daily living (bathing, toileting, grooming, meals, housekeeping and laundry), medication administration & management by Licensed Practical Nurses, home visits by a physician, fun activities like picnics, outings, exercise, and most of all – a family environment with an approach that promotes living a meaningful life. Contrary to misconceptions that many have of the western world, the families of the residents living at the Green Houses were very involved in the care of their loved one. Many would visit every day and participate in outings, house parties and take an active role in ensuring their loved one received the best of care. Despite being the first of its kind in the state of Florida, our facility quickly gained a reputation for being able to handle difficult cases that many other institutions were unable to. This was primarily attributed to the approach our staff was trained to use when interacting with the residents known as Validation Therapy and redirection.
Validation Therapy: "They are trying to do the best they can"
Imagine travelling to a foreign country where you do not speak the language. The people around you are unfamiliar, they cannot understand what you say and no matter how hard you try, they are unable to help you. It is likely that such a situation would quickly become very frustrating for you and you would find yourself feeling helpless.
The experience is very similar for someone living with dementia. The people around them feel unfamiliar and they try to do the best they can to communicate but are unable to because of the disease. This often leads to their frustration and they may become aggressive toward those around them. Very often, their behaviors are connected to a need they are trying to communicate. These needs could be in four categories: Physiological needs (they need the bathroom, they are hungry or thirsty or in pain), social needs (companionship, emotional support, love), safety (security of the body, family, resources), and esteem (respect of others, self-confidence). It is important to remember that all behavior has meaning.
An ineffective method of responding to an unpleasant behavior of a person with dementia would be to forcefully try to control them or force them to see reality. For example, if a patient insists her mother is alive and she needs to call her, a caregiver using reality orientation method would remind her that her mother is in fact dead and force her to see the truth. However, this approach is very destructive and only leads to a stressful outcome. Using validation and redirection, you can approach the same situation differently and have a positive outcome for everyone involved.
Be curious: Instead of reacting to a behavior, the caregiver must act like an investigator and watch for the clues the patient gives to identify which need is being communicated. I had a patient who would abruptly start touching her clothing, rolling and unrolling sleeves and unzipping her trousers in public. After observing her behavior and asking simple questions, I was able to identify that this behavior meant she needed to use the bathroom.
Positive communication: Use a respectful and calm tone of voice, and short sentences. Ask simple questions that can be answered in either 'yes' or 'no' and have non-threatening body language. Empathize with them and validate their feelings. One of my favorite patients at the Green Houses would start crying and ask for her deceased husband every evening. Instead of ignoring her emotions, I would empathize with her, make her feel valued, hold her hand, give her a hug and appropriately redirect the conversation to other topics of interest to her. She loved to talk about her grandchildren so that was a great way to divert and calm her.
Validation therapy was first developed in the 1960s by Naomi Fiel and is now one of the most widely used approaches in the industry. A critical aspect of validation is helping the individual feel valued and that they have purpose. Some simple ways caregivers can engage in meaningful ways are:
Ask them for their help in daily chores (household tasks like cleaning, folding laundry, removing weeds from the garden, planting flowers, picking vegetables etc.)
Let them decide what clothes they will wear – give them 2-3 options.
Engage them in activities they enjoy – if they like painting, reading a book, fixing broken items then allow them to safely participate in those activities.
Reminisce with them – ask about their wedding day, trips, and other special occasions, look at old photographs.
Regular exercise– at least 30 minutes of exercise every day is necessary for overall health, to reduce anxiety and to get proper sleep.
Fresh air and sunlight are very important for individuals with dementia. Give them the freedom to go for walks under supervision.
Read a book or the newspaper aloud to them.
Listen to soft and soothing music. There is a lot of research that shows music helps individuals with dementia relax and stay calm. Often even when other skills have gone, they can still remember the lyrics to their favorite song.
It is very challenging to care for someone living with dementia. Caregivers are pulled in many different directions as they try to balance their own lives with providing 24×7 care to a loved one with Alzheimer's. It takes a toll physically and emotionally on them. But I can attest to the fact that caring for someone with this disease is also one of the most rewarding experiences. Their appreciation for acts of kindness and love are unlike any other. They may not remember what you said, or who you are, but somehow they always remember how you made them feel.
May Allah bless all the people providing care to individuals with dementia.
The author has a Masters in Healthcare Administration from the University of North Florida (USA), is a certified trainer on Alzheimer's and related disorders and is licensed by the state of Florida as an Assisted Living Manager.