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«Created for families by families Living Life to the Fullest: Families Share their Ideas A resource of strategies for caring for an individual with ...»

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Living Life to the

Fullest: Families

Share their Ideas

A resource of

strategies for caring

for an individual with


Created for families

by families

Living Life to the

Fullest: Families

Share their Ideas

A resource of

strategies for caring

for an individual with


Created for families

by families

Please be advised that each person with HD is unique, with

different and changing needs. Before using any of the

suggestions contained in this booklet please consult your physician or relevant health professional before to be sure that it is safe and appropriate for the individual’s care.

In the face of it all, first and foremost, you need to take care, not only for the person that you care so much about, but also for yourself.

Contents Introduction

Strategies for the Physical Challenges of HD

Maintaining independence

Preventing falls and injury

Transfers and fall prevention

Stability and posture

Daily comforts




Food storage

Oral care

Swallowing medication





Tracking the physical HD progression

Strategies for the Cognitive Challenges of HD

Complex tasks

Getting started

Getting “Stuck”

Decision making


Visual-spatial deficit

Slow thinking, slow to respond

Memory and recall

Communication and conversation


Lack of self-awareness and denial

Mental stimulation

Tracking the cognitive HD progression

Strategies for the Emotional Challenges of HD

Anger and emotional outbursts

Apathy and irritability


Introduction The Huntington Society of Canada is a national network of volunteers and professionals united in the fight against HD since 1973. The Huntington Society of Canada aspires to a world free from Huntington disease. The Society maximizes the quality of life of people living with HD by delivering services, enables others to understand the disease; and furthers research to slow and to prevent Huntington disease.

The purpose for Living life to the Fullest: Families Share their Ideas is to provide insight into the nature of Huntington disease and to provide alternative ways of thinking about creative ways for individuals living with this disease to make life easier and for others to support individuals living with Huntington disease through the progression of the disease. This information is not meant to replace an individual’s ability to choose for themselves or the need for individual assessment by an appropriate therapist: Physician (Family, Neurologist, and Psychiatrist), Neuropsychologist, Occupational Therapist, Physiotherapist, Speech-Language Therapist, Nutritionist, and Dietitian. These specialists, along with information pertaining to the specific individual will aid in the development of an appropriate care plan. The Huntington Society of Canada has also developed a number of other resources (e.g. Physician’s Guide to the Management of Huntington disease, and the Caregiver’s Handbook for Advanced-Stage Huntington disease) which may also provide valuable information into the care and support of individuals living with HD.

The nature of Huntington disease means that those living with will experience a wide range of changes in movement, emotional and thinking. These changes can affect multiple aspects of their participating in the world: Activities of Daily Living, Instrumental Activities of Daily Living. This handbook is not meant to provide inclusive suggestions for ideas that will help individuals living with HD as each person is unique with individual preferences, desires and triggers. It is most important to know the individual who you are supporting well: talking with the individual or their families, to learn about their unique qualities. This information will inform your ideas on how to best support. We have included some ideas that may work to encourage eating, bathing, or reduce frustration or aggression. We encourage readers to share their solutions in how to make life easier with the Huntington Society of Canada to potentially be incorporated into future editions of this book.

i Strategies for the Physical Challenges of HD Challenge: Maintaining independence Strategy: Baby monitor Placing a baby monitor in a room can provide a sense of security in case of need and/or assistance while still maintaining privacy.

Challenge: Preventing falls and injury Strategy: Hospital bed A hospital bed with rails can be used to prevent falls. The bed rails provide security and the ability to raise and lower the bed provides more lateral mobility and an increased ability for personal grooming. Padding around the railing may be helpful to prevent injury.

Strategy: Safety frame and grab bar A safety frame and grab bar around the toilet provides additional support as physical strength lessons. It might also be helpful to use a raised toilet seat.

–  –  –

Strategy: Hospital bed with legs removed and soft carpet A hospital bed with the legs removed, placed on a soft carpet, places the bed closer to the ground reducing the distance in case of a fall.

Strategy: Hip pads Hip pads are available to strap around hips to protect against fractures.

Strategy: Helmet Wearing a helmet can prevent injury once falling becomes a concern.

Strategy: Walker A walker can help with stabilization when walking. Consult an Occupational Therapist or Physiotherapist for the most appropriate type and fit of walker.

Strategy: Physical space and footwear Reduce clutter and loose rugs in the home. Wear supportive, non-slip footwear.

Strategy: Physical health Have eyesight and hearing checked regularly (they are important for balance).

Do not walk while wearing reading glasses. Always wear hearing aids. Have medications evaluated (some cause dizziness and weakness which increases risk of falls). Have strength and balance tested regularly.

Regular health checkups are important for everyone. These checkups should include, but are not limited to: Eyesight, hearing, medications, strength and balance. Always wear hearing aids, and do not wear reading glasses when walking.

2Challenge: Transfers and fall prevention

Strategy: Transfer belt A transfer belt is a belt with handles that can be worn by a person who needs help with transfer. The transfer belt enables the caregiver to help the individual transfer from one chair to another (e.g., Love seat to wheel chair, wheel chair to toilet, etc.) and to shift positions. When used properly, the transfer belt helps to lessen the strain on the caregiver’s back and leaves the individual with a greater feeling of safety. Instruction in to the proper use of the belt is important to prevent injury for everyone.

Strategy: Electric lift and rolling table An electric lift can be helpful for moving an individual from bed to chair, to toilet, etc., when mobility becomes very difficult. Tracks are installed on the ceiling, or free standing options are available. Training in the proper use of this lift is important to ensure the safety of the person with HD and the caregiver.

3 Challenge: Stability and posture

Strategy: Foam wedge A foam wedge helps with stability and maintaining proper posture. A foam wedge can be used under the seat of the wheelchair. Speak to the Occupational Therapist or Physiotherapist who prescribed the wheelchair to ensure that the size and position of the wedge assist in posture. If the wedge is not place correctly, the sitting balance and muscle tone could be made worse.

Strategy: One-way slide mat Try a one-way slide mat placed under an individual where they like to sit (eg.

Loveseat, favourite chair, etc.). In the later stages of the disease, individuals may have more difficulty in maintaining their balance, which affects their posture and they may need assistance to re-position themselves. A one-way sliding mat allows the caregiver to maneuver the mat to easily readjust the individual as needed.

4Challenge: Daily comforts

Strategy: Reclining leather love seat Reclining leather love seats are a comfortable solution when individuals spend more time in the sitting position. Large controls can be easy to use. The love seat allows family members to sit with the individual and the leather surface is easy to clean.

Strategy: Large and flat TV remote Buy a large and flat TV remote control (can be found at drug stores and stores that sell assistive devices). This makes changing channels easier, allows more independence in watching TV, and makes watching TV more enjoyable.

Strategy: Cordless headphones Buy a pair of cordless headphones so that the person with HD can listen to TV without distraction. Once chorea becomes so great that the movement of the head causes problems with keeping headphones on head, attach the headphones to the liner of a hardhat.

Challenge: Mobility

Strategy: Wheelchairs A wheelchair should be fitted to meet the needs of the individual – A wheelchair lower to the ground works well as family members can use their feet for mobility.

Later in the progression other changes should be assessed as needed such as a more comfortable chair with footrests. There are some wheelchairs that have been designed with the specific needs of people with HD – check with an Occupational Therapist or Physiotherapist for these specific pieces of equipment.

The trick is to find a balance between comfort and usefulness.

5 Challenge: Eating

Strategy: Shaped utensils A large-handled set of utensils with a shaped fork and spoon can be used if an individual has trouble feeding him/herself. An Occupational Therapist can provide an assessment, inform you of the different kinds of cutlery available, and help to select the ones that will help the most.

Strategy: Eating stands Using a stand to place the eating trays on during mealtime provides convenience as it can aid both the individual and the caregiver.

6 Challenge: Eating Assessments by a speech language therapist and/or nutritionist are important to determine the proper food consistency and feeding techniques.

Strategy: Large-based mug and straw A wide base mug makes it easier to set the mug down and provides more stability.

Strategy: Thicken Up The product “Thicken Up” can be added to thinner liquids and foods. This product can help with swallowing problems, limiting the risk of choking issues.

–  –  –

Strategy: Thicken liquids (soups, drinks, sauces) There are many ways to thicken soups, drinks and sauces often already found in

your kitchen cupboard:

• Use enriched cereal or rice cereal • Already thick juices such as tomato and pineapple • Blend fruit juices with fresh or canned fruit • Milkshakes or eggnog • Use gelatin, milkshake thickener, or instant pudding • Use instant mashed potato, baby rice or flaked rice Strategy: Feeding techniques When assisting someone to eat remain at eye level while feeding. Allow enough time to swallow and check for a complete swallow. Make sure the bites are not too big (e.g. offer only 1 teaspoon at a time, or even less). Allow the persons lips to close completely around the teaspoon and apply a slight downward pressure on the tongue when removing the spoon from the mouth. For some people with HD it is helpful to use only one texture or fluid consistency per mouthful. Ensure a complete swallow before offering a drink. Check mouth once meal is finished and clear away any remaining food between the gums and cheeks.

Strategy: Chin to chest Encourage the person to bring their chin to their chest when they are ready to swallow.

Strategy: Ice water before and during meal Beginning a meal with a drink of ice water (lots of ice), this prepares the mouth to swallow. Allow a drink of the ice water throughout the meal, after every three mouthfuls of food (only once food is completely swallowed and cleared from mouth).

8 Challenge: Eating Assessments by a speech language therapist and/or nutritionist are important to determine the proper food consistency and feeding techniques.

Strategy: Food temperature Hot or cold items appear to be easier to swallow than room temperature items.

Make sure food is not so hot that they burn the mouth.

Strategy: Use a teaspoon Use a teaspoon for eating to reduce the amount of food in a mouthful, slowing down the eating process and allowing for more proper chewing.

Strategy: Keeping food moist Keep food moist – use sauces, gravy, and soups, such as cream of mushroom.

Strategy: Encourage coughing Encourage coughing during a meal; it is the natural way for the body to prevent food and beverages from going into the lungs.

Strategy: Calm and quiet Feed in a quiet area to reduce distractions (distractions increase swallowing difficulties). Speak calmly and quietly and encourage the individual.

Strategy: Wrist weights Wearing wrist weights while eating helps to slow the chorea and make feeding oneself easier.

–  –  –

Strategy: Food selections from all food groups Breads and cereals group – soft breads with crusts removed; bread buttered on both sides; rice (well cooked), macaroni, pasta, preferably with sauces or cream;

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