The forgotten side of dementia

I go to visit Giovanni* at his nursing home in a comfortable middle to upper middle class suburb of a major Australian city.

He is lying, part prone on the bed that has become his 24/7 home; its metal railings are his picket fence. He is wiping his mouth with the curtain, attempting to clean up the fresh vomit that is spreading down his the pyjama top, scattered over his sheets.

The nursing sister, horrified, pulls the curtains from his strong grip.

My job is to examine his mouth, to find the source of the toothache that he cannot precisely communicate because his dementia is so advanced that he has forgotten even the Italian he once spoke with verve and eloquence. The only way tooth pain has been detected is through the winces he makes when eating certain foods, and the fact that he has been avoiding eating at an increasing rate.

It is almost impossible to conduct a proper examination, given that he is lying in bed. I cannot get close enough, and looking at the mess on his pyjamas, I am not sure that I want to. Dentists require excellent light to do their work – absolutely impossible in this setting. What I can see is a once fine set of teeth, impacted with food. They are pitted with decay. His gums are swollen, shiny and red – clear signs of chronic gum disease. There is nowhere near the level of care and attention to oral hygiene that his teeth require, care that he was once able to give them. He cannot perform it. Such skill has evaporated away with his Italian, his memories of his wife and children . . .

Staff at nursing homes simply do not have the time nor the skill to conduct the thorough oral hygiene protocols that people like Giovanni so desperately require.

It takes at least 10 minutes to floss another person’s teeth in such a setting, then brush them really well. And that is if you are working with a cooperative person. Often people with dementia are not. Some of them will punch, kick and grab with preternatural strength for their tiny wasted limbs.

Food in many nursing homes is appalling from a dental perspective – a soft sweet, decay-fuelling mass designed for those who struggle to chew. And who would be cruel enough to deny Giovanni his sweet afternoon biscuit, with his cup of milky tea?

At the examination Giovanni is sweet and cooperative, a real pleasure, in spite of the vomit. I see the cause . . . and then comes the question.

Now what do we do?

Giovanni cannot walk. He certainly cannot drive as he would have done perhaps only 2 years earlier. He is bound to his bed and equally bound by paperwork and consent issues. He cannot be treated without the consent of his family who do not want to pay. To get him to the surgery – which is essential in regard to the legal requirement to take an X-ray prior to treatment – requires detailed paperwork and more approvals.

Meanwhile the man is suffering the pain he cannot communicate in words . . .

Some nursing homes are privileged enough to have visiting private dentists, some of whom have set up special 'dental' vans for the purpose of treating their patients on-site. This is marvellous, but only serves the needs of those who can and are willing to pay the bills that can be exorbitant. Few dentists want to do this work so the few that do have little competition to keep the prices affordable. Consent remains an issue, dependent upon the willingness of the family to give it. Giovanni, like all others with dementia, have reverted to a child-like state, and can no longer give consent for their own care.

Giovanni is far from alone.

More and more people are developing dementia with a full or at least partial set of their own teeth. Many have implants now – a wonderful form of dental rehabilitation until you no longer have the capacity to care for them.

With the cognitive decline that happens in dementia, oral hygiene follows the same trajectory, and decay and gum disease rates skyrocket.

Tooth brushing, like the stories of times past, relatives' faces and names, is completely forgotten about. Partial dentures that must come out at night-time, stay in 24 hours a day along with the food they collect. Most residents of aged care facilities are chronically dehydrated from insufficient water intake. If they are able to walk, it can take 5 minutes to navigate 5 metres to the toilet with a walking frame, or to struggle off the mobility scooter. It can take minutes to get a bedpan . . . if they remember to buzz at all. It is often easier not to drink. Add in the mouth drying effects of the multiple life sustaining medications, and you have the perfect storm for rotting and broken teeth, infected root stumps, gum boils, pain and infection that cannot be communicated.

For many residents, dental disease is present when they are admitted to full-time care. It is easy to overlook visits to the dentists when there are the concerns of the cognitive decline pressing for attention. They start their time in the facility behind the eight ball, so to speak.

Too often I speak to families who insist that the staff at the nursing homes are responsible, have to ‘do something’. This is a practical impossibility. Are those families willing to pay for the doubling of staff this would require? What about their parents who are uncooperative, or outright aggressive?

As for changing the food? Well that is akin to manoeuvring a dinosaur. Mass catering delivery systems are entrenched, costs must be kept low . . . and this is to no one’s satisfaction.

It is also important to note that those chronic dental infections contribute to chronic heart disease, and exacerbate diabetes, making blood sugars harder to control.

It is a simple fact that we are in the middle of a new and burgeoning burden of disease. It is the forgotten side of dementia in the era that has prided itself on extending human life and ‘saving’ our teeth in old age.

Dental neglect and disease is something we would do well to remember in our calculation of the growing human toll of the diseases of old age. This 'forgotten' disease calls for us to look very astutely at self care . . . taking care of our own oral health . . . and how we can support the care of others who can no longer do it for themselves.

No one person or agency can ‘fix’ this or make it go away. The responsibility for this problem falls on the shoulders not just of aged care facilities, but the state and federal departments of health, the dental profession as a whole and its individual members who have served those residents, and the families of those residents.

It is something for every one of us to be aware of and to consider deeply. All of us are ageing, and may one day face the same issue ourselves.

Fact Sheet – The Adelaide Dental Study Of Nursing Homes. 1st ed. Adelaide: Australian Institute of Health and Welfare. Web. 27 Jan. 2017.

*Name changed to protect and honour the privacy of the client in this story.

Filed under

DementiaDiseaseMedical treatmentIll health

  • By Anonymous

  • Photography: Joseph Barker

    To sketch, paint and question life. To cook, laugh and wonder why. To hug, hum and appreciate the sky, to look into another's eyes. These are some of the reasons Joseph loves life and is inspired to contribute to this amazing site.