Understanding the Experience of Dementia
Mar 02, 2017
By Sinéad Grennan, Chief Executive, Sonas apc
Dementia has been described as a journey because it changes over time and the damage to the brain that it involves is unfortunately progressive. It often begins with memory difficulties. Over time, as the dementia progresses, the person may experience a range of other cognitive, motor and sensory difficulties and challenges. The symptoms are variable, differing from person to person, and also depending on the type of dementia involved.
When caring for a person living with dementia, it’s helpful to be aware of the different challenges they might be facing and to tailor your support so that the person can maintain their autonomy for as long as possible.
A person may have a range of sensory and visuo-spatial difficulties. The Scottish Dementia Working Group has produced an excellent booklet, with accompanying video, called Dementia and Sensory Challenges. The booklet can be downloaded free of charge at https://dementiacanbemorethanmemory.wordpress.com
It also pays to learn a little about how dementia affects communication. A person’s thought processes may be confused, their short term memory impaired and their language disjointed. Behaviour can be the most significant form of communication, especially as a person’s language skills begin to falter. Understanding how your behaviour impacts the other person can be very helpful and facilitate easier communication.
Consider exploring how to make the family home more “dementia-friendly”. Some small, inexpensive measures can make the home a safer place and facilitate independent living.
- Be a warm, calm, reassuring presence.
- Use positive language. Try and eliminate words like shouldn’t, can’t and don’t from your vocabulary as it can make a person feel that they are being dismissed and treated like a child.
- Try not to highlight and correct mistakes.
- Try not to contradict the person, even if what they are saying is factually wrong.
- Remember the person’s communication strengths and retained abilities.
- Most communication is non-verbal. Even if a person doesn’t understand what you’re saying, they will quickly pick up on your body language, tone of voice and facial expressions.
- Don’t take communication deficits personally.
- Believe there is sense within the conversation. It may seem irrational and illogical to you, but make complete sense to the person.
- Establish the person’s reality. As dementia progresses, short term memory becomes transient but memories from childhood and early adulthood can be quite clear. In order to understand what’s happening now, the person will often use reference points from the past.
Make your home more “dementia-friendly”.
- Research has shown the impact of colour on a person with dementia. The colours of walls, floors and objects can affect a person’s reality orientation, mood and behaviour. As the person’s colour perception may be weakened, strong colours can be used to emphasise what’s important and compensate for any visual impairments. For example, a person may have great difficulty identifying a white toilet in a white bathroom. Using a toilet seat that’s a different colour to the walls and floor can be very helpful. Similarly, in table settings, it is good to use plates that contrast with the table. Pale colours can be used to de-emphasise what’s not important. Floor coverings that have bold, contrasting patterns can be confusing to a person who may have difficulties with depth perception.
- If the person has difficulty identifying rooms in the house, put up pictures on the doors indicating their functions. This helps with reality orientation. For example, you might have a picture of a bed on the bedroom door or a bath on the bathroom door.
- Make sure to have good lighting throughout your home to offset possible visual difficulties.
- If you have a garden, consider how “dementia-friendly” it is. The outdoors can be a hugely therapeutic environment. Make sure it is safe and accessible.
Places to go for support
- Talk to your GP out about the type of dementia involved. The symptoms and effects of Alzheimers are quite different to, for example, vascular dementia or Lewy Bodys Dementia.
- Call your local public health nurse and find out what day and respite services are available to you.
- The Alzheimer Society of Ireland is a valuable resource for families. Ireland's leading dementia specific service provider, it has more than 100 services across the country. Contact your local branch of the Alzheimer’s Society or call the Alzheimer National Helpline for support and advice at 1800 341 341.
- See if there’s an Alzheimer Café or other support group near you. The Alzheimer Café is a support group for people with dementia and their carers. It provides a combination of information and support, with an opportunity to meet others on the dementia journey. For information on an Alzheimer Café near you, go to www.alzheimercafe.ie.
- Do some research of your own. Websites such as www.alzheimer.ie (the Alzheimer Society of Ireland) or www.alzheimers.org.uk, the DSIDC (www.dementia.ie), and the Dementia Services Development Centre based at Stirling University (www.dementia.stir.ac.uk) have a large amount of information and resources that can be very helpful. You’ll find lots of ideas there on how to make your home more dementia-friendly.
Sonas apc is a dementia training and resource organisation, and registered charity (CHY 11839). It is holding its 9th International Dementia Conference on 15th and 16th May, 2017 in the Citywest Hotel, Dublin. Its academic partner is Dublin City University and its primary sponsor Home Instead Senior Care. Conference attendance costs €150 per day, with a reduced rate of €65 for family carers. To book a place, contact Sonas aPc at (01) 260 8138 or book online at www.sonasapc.ie.