The Importance of Resilience in caring for someone with dementia

How The Ness helps those who care?

I am amazed daily at the strength, compassion and care families have in supporting someone who is living with memory loss.  At The Ness we know that we have 2 equally important jobs; 

1) To help the individual who informally cares for someone living with dementia and 

2) Secondly to stimulate and help the individual who is living with dementia.

I often hear individuals saying ‘they can manage fine’ and ‘we don’t need any help or support’ but the most important piece of advice I can possibly give is to encourage anyone who helps someone living with dementia to seek a network of support for themselves as well as the person living with dementia.  There are 3 crucial reasons for this.

Staying happy and resilient

Dementia is a chronic illness that (very sadly) has no cure and will deteriorate.  The journey can be up to 10 years or longer from noticing memory damage.  The person who becomes the primary informal carer will often live with the person 24 hours a day, 7 days a week for years or decades.  During this time they often become more isolated, their life is subsumed by the person they are caring for, they get less sleep, look after themselves less, and lose perspective.  All of us, whether we care for someone living with an illness or not, need time for ourselves.  If we don’t plan time for self-care and enforce time out for our needs then we become less happy, less resilient, less caring, less patient, and less capable.  

At The Ness Hubs, a core part of our dementia support service is building time out for the informal carer giving them the space to rest, to work, and to do something that brings them joy.  If you want to stay resilient make sure you don’t stop taking time for yourself!

Keeping those living with dementia social

Secondly, the person living with dementia also needs to be among lots of other people.  They may not know this or express this desire but unless informal carers separate themselves from the person living with dementia and encourage the individual to spend time away from them, trusting alternative people, then shadowing can start to occur as the illness progresses.  

This is a common symptom of dementia that occurs in the moderate stage, in which the person living with dementia feels completely lost and confused when their primary informal carer is not in sight.  They no longer recognise many people or feel safe in the world but the one person they still (often) recognise and feel safe with is their primary carer.  This means they cannot let them out of their sight for more than a few minutes (even to the point of following them into the toilet) without feeling overwhelming panic.  This places immense pressure on the informal carer, they become isolated and locked into the individual living with dementia’s demands, and very quickly their resilience breaks and carers breakdown occurs with social care and older people’s mental health teams getting involved. 

The solution to this symptom of the illness is to build alternative people into the network of support.  Help the individual to build a trusting therapeutic relationship with others, to get them comfortable in going out, in meeting people without you, to maintain boundaries in the relationship.  This is something our dementia support services will achieve, as they become a trusted group of people for the person living with dementia.

The Ness outreach team works hard in this area, building continuity in their therapeutic relationships and trust.  The Ness can then slowly become the trusted support allowing the informal carer to maintain their own identity and their resilience.

Dementia support services outside the family to lean on

Finally, dementia is incredibly complicated, not only the disease itself, the symptoms associated, and the progression through the stages but also navigating the health & social care systems.  Families and informal carers need to have access to someone or a dementia support service or organisation that can guide them through the journey.  Information at the right time in the right way can empower the person caring for someone with memory loss!  Allowing them to be stronger, more resilient, and better able to go on caring for someone over years.  

At The Ness our dementia support services include a carers empowerment group that helps families connect with other people going through a similar situation. This offers expert advice on dementia, social care & funding.   The Ness have a specific carer support expert that is available on the phone or face to face but we go further; you also have access to Occupational Therapists (OTs) and specialist dementia nurses that can guide carers and families through the health & social care systems and ways to fund the costs.  Alongside the specialists, every single Ness member of staff is trained to offer emotional support and to understand what an informal carer is going through.  

In summary, this chronic illness is incredibly hard and goes on for many years. The way to be the best informal carer and to offer the very best loving care you can is to ensure you get expert advice, time for yourself, and introduce other people into your life who will be trusted by the person living with dementia.  At The Ness dementia support services, this is what we do!  We are with you for the journey.