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Care Home Communication

This document outlines key areas to share with your loved one’s care home staff.

Please note, the information below is based on personal struggles/challenges with care homes experienced by my family members in England. The challenges are in the most part due to lack of education/understanding by care home staff about HD, even though they may verbally state they are experienced with it and explicitly state that on their company website. Many of the items listed below may seem like “common sense” to us, but it does not appear to be the case for all care home staff. It is important to keep the lines of communication open with the care home, be polite and integrate yourself as a key member of your loved one’s “care/support” team

  1. Personal Care
  • Keep finger and toe nails trimmed to prevent self-scratching
  • Wash face thoroughly in the morning, remove sleep/eye crust
  • Apply moisturiser to face and hands morning and night
  • Use of an electric shaver in place of wet shave, based on severity of chorea movements.
  1. Diet & Fluids
  • Share a list of your loved one’s  food allergies, if any
  • Ensure sufficient fluids are provided daily, including at mealtimes
  • Ensure care home staff are trained on;
    • The correct consistency fluid and meals must be served
    • The appropriate utensils to use for fluids and meals
      • Can a straw be used?
      • Do drinks need to be thickened?
      • Are plastic spoons better than metal?
      • Is the spoon size appropriate?
    • Raise any concerns regarding the above with care home therapists/administrative staff
  • Share your loved ones favorite foods and their dislikes too
  • Be sure to research the pros and cons of a peg feeding tube, the day may likely come when the care home asks if this is an option you are willing to consider for your loved one. The request may likely be repeated by the care home.
  1. Physiotherapy & Massage
  • Massage and physio are both extremely beneficial activities for our loved ones
  • Push for these services, if they are available at your loved one’s care home
    • Support from external medical providers may be needed, especially to secure physiotherapy.
  1. In-Room Entertainment
  • Display in your loved one’s room a list of the following;
    • Favorite TV shows
    • Movie genres they enjoy
    • Music/radio stations they like to listen to
    • Any particular smells they enjoy, purchase room spray for the care staff to use
    • Preferences for the TV to be on, or listening to music/radio, when they are resting in their room and going to bed.
  1. Care Home Activities
  • Ask for lists of activities offered by the care home
    • Identify the activities your loved ones would enjoy participating in
  • Ensure care home staff are aware that your loved one would benefit from being present when an activity occurs, even if they are unable to physically participate in the sample activities listed below
    • Music & singing
    • Service animals
    • Arts & crafts
    • Any outdoor activity offered, including those that may occur outside of the care home grounds.
  1. Family & Friends Communication
  • Ask if the home is open to scheduling phone or video calls with family and friends who are unable to visit in person
    • Many homes have large screen devices that can be used for video calls.

This article was written by one of our volunteers, Tonita, and it is based on her personal experience.

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