Fundamentally, a dementia diagnosis does not change a person inside. Whilst their mode of expressing themselves and their ability to remain fully independent may naturally change, their individuality and value to society does not.
Retaining a sense of identity is crucial and can actually slow the progression of the dementia itself. We talk often of being able to live well alongside a dementia diagnosis, and this is absolutely possible, provided the individual at the centre is supported by keeping their uniqueness and sense of self, at the heart of everything.
Caring with respect
Adapting to the experience of living with dementia can take time, and everyone reacts in different ways. More often than not, a dementia diagnosis impacts entire families, not just individuals. It can be extremely challenging, and inevitably distressing, to observe changes in someone you love.
Being the primary carer for someone living with dementia is hard and it’s normal to take some time to adjust to the change. Whilst supporting your loved one, it’s important that you too reach out for help when you need it. Our Wayfinding Team offer one-to-one support for anyone impacted by dementia, whatever stage of the journey you’re at.
The way that you care for someone living with dementia has a huge bearing on their quality of life and even their life expectancy. As individuals we all have the right to:
feel seen and heard
have our cultural or religious views respected
to maintain our privacy
have our feelings taken into consideration
be spoken to or with, and not about
be addressed by our names and titles
If you or your loved one are considering residential care, whether at home or in a residential/nursing home, you have the right to demand that all care you receive preserves the dignity of the individual.
Being valued and respected
The different stages of the dementia journey will all bring their unique challenges. How those challenges are met and handled has a significant impact on a person’s sense of self- the preservation of which should be paramount throughout.
As dementia symptoms worsen, and things like speech or mobility become more difficult, through practical caring we can sometimes neglect to act in ways that maintain focus on respecting the individual. Even small gestures, such as knocking before you enter the room, or ensuring that commodes or catheter bags are discreetly hidden, can make a huge difference. Here are some simple, practical ways to help someone living with dementia to continue feeling respected and valued.
If supported feeding is required, always sit with your loved on, never stand. This can feel intimidating.
Offer simple choices to help maintain their autonomy, such as ‘would you like to wear your green tie today?’.
Encourage them to continue with activities they enjoy and help them to find workarounds when certain tasks become more difficult.
If help is needed with dressing or washing, make sure that their privacy is preserved as much as possible.
Never talk about them when they are present. Even if communication is challenging for them, it’s important to continue to involve your loved one in the conversation- looking out for nonverbal cues when words are difficult to find.
Above all, remembering that, whatever stage of the dementia journey, the individual at the centre is a unique human being, with all the same feelings and emotions. Making space and time for them to express themselves, and patiently listening, is extremely powerful.
For Dignity Action Day 2023, we have assigned two dignity champions, Cath and Kayleigh, to ensure that we at Sage House continue to treat everyone with dignity and respect. Here’s what they had to say about their roles:
"As senior support workers at Sage House, we strive to ensure that we always respect everyone as an individual, empowering others to make their own choices and to always promote independence, enabling them to live well with dementia."
We all need to be listened to and our Wayfinding Team are here, whenever you’re ready to talk 01243 888691.
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Our Wayfinding Team are here to help but adjusting and educating ourselves is, for some, the first step on the journey. Offering free advice and guidance for your whole dementia journey, even from before you have a formal diagnosis. The Wayfinders can also support you to access other services we work with to provide holistic, person-centred support.
If you have concerns about your loved one's memory, you can contact our Wayfinders on 01243 888691. They can support you and your loved ones for your whole journey with dementia, from pre-diagnosis to end of life care.