“Dear Jan, Can you please give me some advice on supporting residents and their relatives with a diagnosis of dementia? Thank you.”
Lucas,Activities and Wellbeing Coordinator
Dear Lucas,
Receiving a diagnosis of dementia can be a devastating blow for both the individual and their family. They may have been aware for quite some time that something was not quite right, but they may have tried to hide it.
Official confirmation can be heart-breaking. Many will have seen the paths others have had to walk in similar circumstances and they can be scared of what lies ahead for themselves or their loved ones.
Residents might already be in your care because they have been unable to manage at home. Sometimes it could be the diagnosis that prompts the move into a care home. Either way, it is common for relatives to carry feelings of guilt and shame, even though it is nobody’s fault.
How can we best support the family?
In my experience the best way to support them is to know that it is not just them facing this diagnosis.
Provide opportunities within your care home for relatives of residents living with dementia to come together, get to know each other and share experiences. You can make this into a social event and invite in guest speakers and health professionals to provide support and guidance. Knowing that you are not alone on the journey is vital, as is accessing support and reassurance from people in similar situations.
You could also organise fundraising events for dementia awareness. This reflects very well on your care home and also enables relatives to feel as though they are doing something proactive and positive in a challenging situation.
Provide information, fact sheets and links to sites such as the Alzheimer’s Society so they can understand what their loved one is experiencing.
Keep communication open. Make sure relatives are aware of what their loved one has been doing. Make sure they receive copies of your home’s newsletter and activity calendar, so they know what has been going on. If they visit the home regularly, you could leave photographs in the resident’s bedroom, to demonstrate how they’ve been participating in the home’s activity schedule. These can also be emailed if the relatives are not able to visit. Seeing and hearing about participation can be reassuring to relatives; it also offers something to talk about when they visit.
Let relatives know what to do to help…
Encourage relatives to write out the life history of their loved one and bring in photographs. They could make up scrap books of memories and bring in personal items from home, to make the room look more familiar to the resident. This also allows care home staff to learn more about the resident and provides the opportunity for meaningful interaction and person-centred care.
Suggest the relatives undertake basic dementia awareness training and see if they would like to become a dementia friend. Understanding how and why their loved one reacts will really help them to best support their family member.
They could provide a window box of their favourite flowers or make up a memory box for their room. If they are knitters or they like to sew they could make twiddle muffs and blankets or a twiddle board. They may even like to volunteer some time to help out with activities.
Teach them little tricks of conversation so that they learn to steer the topic away from upsetting memories. Show them how to concentrate on what they can still do, not what they have lost.
Supporting the resident
The resident may or may not be aware of the significance of their diagnosis. If they see their family becoming upset, they may become stressed and withdrawn. By supporting the family in the ways suggested above, you will also be supporting the resident.
Within the home, support the resident by giving them every opportunity to communicate their needs and wants. Take the time to talk to them and provide opportunities for fun and laughter, as well as time to listen to them.
They may be feeling that they have no purpose left in life, so challenge them to help you complete tasks. Even carrying out simple chores such as pairing up socks or folding napkins can boost self-esteem. They may like to help dust their room or be responsible for a part of the garden.
Everyone is an individual and no two diagnoses are the same. It is up to the staff to adapt to any changes they may see and always treat the resident with dignity and respect.
Best wishes,
Jan
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