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13 Dec 2017

Issue 100, March 2008

Huntington's Disease
Changes to memory, concentration, and thinking:

Information for patients and their carers

Dr Donna Sponner, Clinical Neuropsychologist, Royal Brisbane Women's Hospital

Huntington's Disease is characterised by changes in movement, personality and behaviour, and cognitive functioning. This article is primarily concerned with changes in this latter area. "Cognitive functioning" refers to a person's ability to think, reason, maintain concentration and remember information. Patients with Huntington's Disease commonly encounter difficulties such as:

  • Problems taking in information quickly
  • Difficulty learning new information and remembering information
  • Reduced ability to solve problems
  • Difficulty concentrating and dividing attention
  • Problems holding more than one piece of information in mind at a time
  • Problems organising thoughts and ideas
  • Reduced ability to plan ahead and keep track during completion of various activities

Cognitive changes may be the symptoms first noticed in Huntington's Disease, or they may not appear until after the movement and behaviour changes become obvious. In most cases, the changes are mild in the initial stages and become more noticeable as the disease progresses.

There are a number of strategies that can be used to help minimise the effects of the cognitive changes, particularly in the early to middle stages of the disease. Some of these strategies may require the help of the patient's loved ones and/or carer. For example, the patients may benefit from being prompted to use specific strategies, particularly when first attempting to incorporate them into daily life. Some strategies which may be of assistance are listed below:

Strategies to assist MEMORY:
  • Writing information down is a very useful way of remembering important events and appointments (e.g. family birthdays, trips away, doctor's visits). Use of a wall calendar placed in an obvious place (e.g. refrigerator door) is recommended. It is important to write down the event or occasion on the calendar as soon as you hear of it. If movement problems make use of pen difficult, ask a family member/carer to write it down. Look at the calendar each morning so that you can plan ahead for upcoming events. Carers may initially have to prompt the patient to check the calendar daily and cue the patient to write the information down.

  • Make a list of your daily activities and place this in an obvious place (e.g. next to the wall calendar). This should list the routine tasks that you do on an everyday basis (e.g. taking medication, watering the garden, feeding pets).

  • Label cabinets and drawers (e.g. in the kitchen, bathroom, and bedroom) to make it easier to locate items and lessen the pressure to remember where things are kept.

  • Set aside a specific "spot" in the house to place important items such as glasses and keys. Be sure to always place these items in this spot so that they can easily be found when required.
Strategies to assist CONCENTRATION:
  • Limit background noise when trying to concentrate on a task. For example, turning off the TV when holding a conversation may help you to focus on what the person is saying.

  • Ask others to get your complete attention before they tell you something important.

  • Give yourself longer to take in new information - ask the person to repeat what they have said if necessary.

  • Try and complete a task in full before you start another task so that you do not feel overwhelmed or distracted by keeping track of more than one thing at a time.

  • Make sure you have frequent rest breaks on a busy day so that your concentration is not affected by tiredness and fatigue.
Strategies to assist PLANNING and ORGANISAT1ON:
  • Make a list of the jobs you need to do each day and number them in order of priority. Cross each job off the list as you complete it.

  • Before starting an activity, stop and think what you are likely to need to complete the activity. For example, if cooking, get out all the ingredients and cooking equipment before you start. It may also help to write down (or ask a carer to write down) all the steps involved in the correct order.

  • Ask family/carers to break down complex tasks into simple steps.

  • Keep checklists of what to do and in what order for various tasks (e.g. using a video/DVD player, using the internet). Ask others for help with preparing these checklists, if required.

  • Work through problems with people you trust. Write down the problem, discuss it with family members or carers and write down the alternative solutions as they mention them. You may wish to ask one of them to write it down instead.

  • Be prepared for your family and/or carers to prompt you to start different activities.

  • Try and keep the areas you use at home tidy and free of clutter. This will help you feel more organised and better able to complete tasks without distraction.

Most importantly, be patient with yourself. There may be times when you feel frustrated and feel as though you have a "short fuse". When this happens, be sure to:

  • Take some "time out" before you get back into doing an activity.
  • Ask your carers and loved ones for help if required.
  • Include activities in your day that you find enjoyable in order to reduce stress and frustration.

Acknowledgement: Newsletter - AHDA (QLD) Inc

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