Do's and don'ts when caring for a loved one suffering dementia

Depressed senior man in deep thought. [Getty Images]

Two weeks ago, this column discussed the first two major changes victims of dementia go through the first being largely imperceptible while the second being accompanied by serious memory loss and mood and behavioural changes.

The third stage tends to be shorter on average than the first two, taking between one and two years.

This stage is accompanied by severe loss of capacity. Individuals lose ability to respond to their environment and exhibit limited understanding of what is going on around them.

They become frailer and tend to sleep a lot as the brain’s capacity to handle issues continually reduces. The person’s ability to carry on conversation reduces and speech is limited to a few sometimes disconnected words.

Bowel and bladder incontinence which started in stage two is now severe and they require complete assistance on personal hygiene management. As the disease gets worse, the person eats less and has trouble swallowing.

The latter is a common cause of death as the person may inhale food particles which may cause pneumonia when these items, full of bacteria, are carried into the lungs.

This is the toughest stage for one’s loved ones. Because my mother currently exhibits aspects of this stage, it is heart breaking and full of moments of intense personal grief which I cannot show her. 

However, the stage is relatively easier for the person as they are not aware of their incapacities and are not frustrated by them as happens in stage one and two.

This stage demands extreme patience and loving care. Where it is affordable, persons trained in care giving are very useful for stage three.

Having discussed these three stages, I want to share a few do’s and don’ts particularly for the earlier stages.

The first do is always be patient, kind and flexible with persons suffering with dementia. It is easy to get frustrated when people one depended on become mentally incapacitated, and appear difficult, uncooperative and unreasonable.

It is tempting to argue and scold them. Do not. As they forget things avoid using “don’t you remember” or any of its variations.

If they do not remember your name, just tell them who you are again. And again.

Affirm and go along with the person and do not correct them even where they are creating a false reality.

My mother has created a comprehensive story about her doctors that we all flow along even as we recognise it’s her creation.

Use simple sentences and give simple instructions where necessary, ensuring however that you do not treat the person as if they are a child.

Even if the person cannot carry on normal conversation, avoid talking around, about or for them as if they do not exist; it can be frustrating and can cause them to lash out or retreat further into themselves.

Secondly, try to keep routine on key activities. Washing, bathing, eating should as much as possible follow a routine and happen in familiar places.

However, allow for flexibility if the person demands a change. Flow along and be ready to adjust schedules to fit the person’s desires.

Do not force them but instead default to the path of least resistance, cajoling and where necessary distract them with loving activities or objects.

My mother loves to sing and one of the best ways to distract her is to sing along a favourite hymn. Get recordings of such music and allow them to listen and sing along even when alone.

Finally, in the earlier stages of dementia allow as much independence as is practical. Being independent is part of retaining one’s dignity and should be encouraged.

However, the person cannot carry out many activities by themselves and failure to complete tasks can either be frustrating to them or dangerous, like when my mother used to forget to put off the cooker when cooking.

They therefore need loving and respectful supervision. The dementia journey is a long and sometimes difficult one, but it is also a season to build memories.

The less you expect and demand of the person, the easier it will be to enjoy these moments which are short but valuable. Ultimately, only love can see you through this long goodbye.

The writer is an advocate of the High Court of Kenya