“Lolly pop steps and licorice legs” – caring for those with dementia

Each time I uttered, “lolly pop steps and licorice legs!” to one of my clients
whom I used to dress in “a size too short” black pantyhose after her shower, she giggled convulsively.

Early stage dementia can be like that.

Because of the degeneration and death of nerve cells in her brain, namely in the frontal, temporal and parietal lobes, she somehow found this statement extremely funny.

She recognized my face at each visit however did not know my name or remember when I came to last see her, in fact she did not remember what day it was and was always surprised when I told her. Her memory, analytical and logical centres have been effected but we can still manage a laugh together which makes our meetings these days something to look forward to.

After her shower where I allowed her to do a lot of the work herself so as to keep her self-esteem, independence and dignity intact, I placed her underwear and clothing in order of dress on a chair by the bed where she sat after her shower. It was a daily ritual. I allowed her to dress herself while I stood by to give a helping hand only if she became confused. She became confused on very few occasions because of the repetition of the event. This repetitious pattern of dressing was also a gauge for me of how her dementia was changing until a later stage developed over a year or more when she did not understand what piece of clothing went where or how to put it on and later again that these articles were actually apparel at all.

I believe that if someone has dementia they ought to be allowed to do as much as they can for themselves as long as possible and a carer or nurse should never, never force a client with dementia to do anything that they can’t or don’t wish to do. A client can become quite obstinate and occasionally violent if pushed too far or bullied. Patience once again is a keyvirtue to possess.

As you would for any client you have, you must treat a person with dementia with the love and respect you would offer any person. Use a range of approaches and interventions to give practical care that are holistic in nature,  failure free and focused on your client’s abilities not their limitations, which are appropriate to their culture, religious beliefs and family values and attitudes. In fact when working with clients with dementia it is wise to work closely with their immediate family also as it is the family that suffers most especially as their loved one’s disease advances. Reassurance and understanding help the family cope with the slow decline and the often scary changes in behaviour of their loved one.

Dementia does advance steadily and relatively slowly and is irreversible. However as I write, a new drug has just been invented, by an Australia Scientist, that has proven to slow or even cease the disease in its early stage. This will not be available for public use until 2012 or so, therefore for the majority of sufferers this magical help may be too late.

Each client is an individual just like all your other clients and it should be noted that each person’s lifelong personality comes to the fore during the stages of this disease with certain individual traits being more dominant than others.

For example, a person who was a talented pianist in their youth or young adulthood who now has dementia and who may not know what a piano is any more, may still be able to play when sat down in front of the keyboard. Another example is an elderly woman with dementia who was a caring, giving and busy mother during her previous lucid life, now taking care of others in the dementia ward just like she would if they were her children.

You will often find women like this holding hands and doing things for others like helping them sit, get up or accompanying them to their room or toilet. They may even refer to the person in their care as their sister, brother or child. Occasionally when parted from them they may worry or be quite anxious about their whereabouts and safety.

It is not a good idea to challenge their perception or beliefs. What they perceive to be real is real and you will find yourself entering their world of reality quite easily, which is rather a frightening thought!

A person with dementia has problems of orientation i.e.: time, places and people along with short-term memory loss at the disease’s onset which leaves varying levels of intact long-term memory, so that you the carer or nurse may be perceived as being their sister coming to visit them, their old neighbour with children you’ve never heard of or someone else’s relative.  You may even remind them of a long lost friend from forty years ago during a war or, in the case of one of my long lost clients, a long lost lover from 1937!

Unfortunately the latter experience was one that I was unable to reinforce or agreeably perceive with them so another carer who looked absolutely nothing like me was sent along to take my place. I’m not sure what transpired since the changeover however I do know that he hasn’t been chased through the house with open arms and “I swear to God, I love you Helga” shouted after him! Yes, it is always good to perceive the humour in some situations.

This male client was actually interesting in that he had been diagnosed with a type of dementia called dementia with Lewy Bodies, sometimes referred to as Diffuse Lewy Body disease. Its name comes from the doctor who discovered it and from the presence of abnormal lumps called Lewy bodies that develop inside nerve cells and may contribute to brain cell death. This disease shares many similarities with Alzheimer’s disease,  the most common dementia but is diagnosed by historical patterns of symptoms and by excluding all other types of dementia. Its major symptoms are:

• Difficulty in concentrating
• Extreme confusion
• Difficulty in judging distances causing falls
• Visual hallucinations
• Delusions
• Depression

From the book "Strong Hands, Gentle Heart" by Toni Cary
Available through Aspire publishing