Dental Care in Huntington Disease

Huntington disease (HD) is a hereditary, neurodegenerative illness with physical, cognitive and psychiatric symptoms. This means that a person with HD will experience changes in motor abilities, thinking abilities (called cognitive functioning) and emotions.

Healthy teeth and gums are important for everyone in order to avoid tooth decay and gum disease. The health of teeth and gums affects communication, eating, swallowing as well as social interactions and self-esteem. This fact sheet focuses on the special challenges dental care poses for people affected by HD.

CHALLENGES RELATED TO DENTAL CARE AND HD AND TIPS TO HELP

Neglecting Dental Care:

• Difficulty with holding and operating a toothbrush and using dental floss may affect care.
• Transportation to and from appointments may be difficult.
• Apathy (a symptom of the disease) may mean that personal care is not always a priority.
• Financial challenges may prevent people from getting the care they need. Dental care practitioners can request an extension of dental hygiene coverage due to medical need if insurance or government coverage is involved. This would allow for more frequent appointments.

Progression of the Disease:

• Dysphagia (difficulty swallowing) increases over time; a suction toothbrush system can help remove debris, plaque, bacteria and fluid from the mouth.
• A person with HD may be unable to open his/her mouth widely.
• Involuntary movements may make it hard to sit still and may lead to bruxism (grinding and damaging of teeth).
• The high energy diet often required for HD might also include high sugar intake which can cause tooth decay; ask a registered dietician for help.
• Dental care may become more difficult as HD progresses. If dental hygiene is not maintained, then gums can become inflamed and teeth may loosen over time.
• HD can create a greater risk of aspiration (inhaling small particles of food or other substances into the airway).
• Dentures should be checked regularly as progression of HD can affect fit and comfort.
• Without teeth or dentures, there is little cheek and lip support. This affects personal appearance, chewing, self-esteem, word pronunciation and general quality of life.

PREVENTATIVE CARE IS VERY IMPORTANT WITH HD

• Learning about proper dental care is necessary for everyone (e.g. persons with HD, caregivers and persons at-risk) as it is important to keep teeth healthy for as long as possible.
• Caregivers/family members can assist a person with HD on a daily basis.
• An electric toothbrush can be helpful (if the noise and vibration is tolerated); dipping a tooth brush into  mouthwash (instead of toothpaste) can also be effective and easier.
• The use of water pics and air flossers can be a good alternative to regular floss.
• Starting good habits early can help dental hygiene routines become automatic behaviours as the disease progresses.
• Fluoride is important for protection. Consider using toothpastes with a higher concentration of fluoride,  and/or fluoride mouthwashes – weekly with supervision. Fluoride application at regular dental checkups is another option.
• Over-the-counter products (saliva substitutes) may help to ease dry mouth (caused by some medications). There are anti-cavity rinses available only through dental offices that also address this issue, that are able to be swallowed without adverse effects on the patient.
• Some medications may cause more saliva production and increase the risk of aspiration. A neurologist may have treatments for this side effect.
• Scaling can be done on a regular basis by a Registered Dental Hygienist to prevent gum disease.
• Dental filling materials that help to prevent decay are encouraged.
• Avoid eating within 30 minutes of bedtime. Saliva production decreases during sleep – which makes it more  challenging for food to clear the mouth and increases risk of choking and tooth decay.

SUGGESTIONS FOR PROFESSIONALS PROVIDING DENTAL CARE

• Patients must have the legal capacity to make decisions regarding personal care
• Obtain appropriate consent and consult with patient and/or the substitute decision maker for personal care
• Look to family/friends as an invaluable source of information and guidance throughout the process
• Seek information regarding history, likes/dislikes, strategies for providing care
• Consistency of staff who are providing care is important
• Temperature of the room needs to be comfortable
• Offer “white noise”, music, noise-reducing headphones to reduce distractions; encourage patients to use mindfulness meditation and/or guided imagery recordings to increase relaxation
• It may be helpful to have the caregiver in the room (within sight and holding hand if desired)
• A printout from the pharmacy of medications currently being used can be helpful
• See the client more regularly if possible (consider finances and dental coverage available)
• An office space that is accessible will help with balance/gait issues

YOUR APPROACH IS IMPORTANT

**Remember that all processes are slowed with Huntington disease.**

• Each person with HD is affected differently. Getting to know the person with HD over time will help to develop the trust that is needed to provide care
• Speech may be unclear (expressive language is affected), but someone with HD can hear and understand what you are saying (receptive language is not affected)
• Speak clearly allowing enough time for the person to comprehend and respond
• For those with HD, communication can become frustrating and exhausting
• Use humour when appropriate
• A warm, caring and respectful approach will be appreciated

SAFETY CONSIDERATIONS FOR PROFESSIONALS AT THE DENTAL OFFICE 

• Be aware of the patient’s risk of aspiration or micro aspiration when providing care; use caution regarding the use of night time products for those at-risk of aspiration
• For patients with a high degree of involuntary movements, consider providing dental treatment using general anesthetic in a specialized medical facility
• A semi-reclined position with use of support cushions can help with relaxation and involuntary movements
• Book longer appointments and try to book appointments at the best time of day for the patient
• Consider having a dental assistant present to assist the hygienist
• Have the dental assistant suction to decrease risk of choking
• Use extra-oral fulcrum (hand position) when scaling
• Consider use of a rubber mouth prop, or a mouth clamp, in order to give more comfort to the patient

For a printable version of this information, please click here.

RESOURCES

A Caregivers Handbook for Advanced-Stage Huntington Disease
– Page 31 has a helpful section on dental care

A Physician’s Guide to the Management of Huntington Disease (Third Edition)
– Emphasizes the need for ongoing, proactive dental care to help with speech and swallowing

Canadian Dental Association

Fact sheets on a variety of other topics pertaining to HD are available by clicking here.

Ongoing support, education and information is available from the Huntington Society of Canada (HSC). You can find a listing of our Family Services team members by clicking here.