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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.

Choosing Dementia Activities

Activities within Dementia – How to choose the right activity

Last month I wrote about the 4 guiding tips for running activities for those living with memory loss and this is the next blog in a series on activities in dementia care.  In the last article, I mentioned that pushing someone you are related to into an activity that they may not usually do or neither of you enjoys (like chair exercises or flower arranging) will result in refusal and occasionally an argument, so choosing the right activity is hugely important.  In this article I am going to talk through how to choose a stimulating dementia activity that you can do away from a dementia day care centre, that will be enjoyable and appreciated by both parties.

Dementia activities at the Ness Care Group

What We Do At The Ness Day Care Centre

At The Ness dementia day care centre we split our treatment groups into small groups of 4/5 people.  Each group is paired according to their cognitive ability and according (as much as possible) to their interests.  We use a planet system with those in Venus capable of the most complex activities and those in Saturn managing only simple, often sensory actions.  This is important as there is no point in encouraging someone living with dementia to complete a 500-piece puzzle if that person can no longer imagine the final picture and hold the pieces.

Step 1 to creating an activity for a loved one with dementia or memory loss

So the first step is understanding what someone believes they can still achieve.  I’ve framed that sentence carefully because the point is NOT what the person with dementia can still do but rather what that individual believes they can still achieve.  If your husband/father used to be the person who fixed the house, made shelves, and did all general DIY, he might still believe he can do those jobs. It is worth investing in some wood, glue, wires, car engines, garage tools, etc, and doing an activity based around DIY.  Remember the end result is unimportant but the pleasure in doing something together is huge and if you can also praise and say ‘thank you, how useful!’ then you are also building a sense of self-worth/self-esteem so crucial for someone living with dementia.  This is a mantra we use at our dementia day care centres, and we always see our dementia patients smiling and enjoying themselves. So choose an activity that fits someone’s own sense of ability and an activity that allows them to feel they have achieved something.

Step 2 to creating an activity for a loved one with dementia or memory loss

The second step is to choose an activity that links with a past hobby, interest, work, holiday, or memory.  Once again the end result is not important – so if they used to love to sew or knit but can no longer hold the needle or understand the pattern, bringing out a collection of sewing materials, pictures, old material, the history of how sewing changed in the 1950s, anything that will stimulate reminiscence and encourage conversation, possibly laughter, also it has a sensory aspect, a visual aspect and an opportunity to praise.  Or your father’s work took him to foreign countries and allowed him to meet different cultures, an activity based around travel, smells, pictures, objects, photos, and history books would bring great pleasure and encourage memories from the distant past.  Choose an activity that is linked to a past experience or pleasure.  

Notice in both examples I mention touch, sight, and smell, I’m a big believer in multi-sensory activity.  Memories are often linked to smell, sound or sight rather than conversation. 

Two simple steps in preparing for a stimulating activity away from a dementia day care centre, however, remember that in working with those with memory loss it is the action, not the results that should bring pleasure (the correct answer to the quiz or crossword is irrelevant).  The goal is both stimulation and an increase in self-esteem.

In the next blog, we will delve into some specific activities that you can do at home, and outside of dementia day care centres for those living with mild to moderate memory loss.

Get dementia respite care at The Ness

If you need some support in running activities for a loved one living with dementia or memory loss, then learn more about our dementia day care centres and dementia support services. 

Get a complimentary consultation to discover how we can provide dementia help for you and your loved one by completing our online form, or calling us on 01626 774 799

 

 

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