What does a diagnosis mean for us?
Before considering this question, let’s briefly pause to reflect on the use of the word “us”; because dementia doesn’t just affect the person diagnosed, it’s a journey that whole families, couples and friends will go on together. No two journeys will look the same and this uncertainty can create anxiety, for people living with dementia and their loved ones. After receiving a dementia diagnosis, sensitive planning for the road ahead can help all concerned to feel more in control, less fearful and more prepared. No one is born ready for living life with dementia but with gentle guidance and support, from family, friends, and organisations such as Sage House, it is possible to maintain a fulfilling and active lifestyle.
It can be both emotionally and practically reassuring, to lay out plans for a future living with dementia. Whilst a dementia diagnosis is the start of a shared family process, it’s vital to maintain focus on the individual at the centre- the person living with dementia. It is natural for families and loved ones to start adopting the role of ‘fixer’ or ‘carer’, and perhaps fly into crisis mode before it is strictly necessary. After all, it’s human instinct to try and protect or shelter those we love. However, depending on the stage of the dementia, this sudden role change can unsettle and even upset the person you love. All dementia journeys progress differently, some people living with dementia can remain independent for years. Regardless of your family’s stage in the dementia journey, respect for the personality and wishes of the person living with dementia, should remain top priority as you start planning together, for the road ahead.
Here are some suggested discussion points for you to consider, as a family/couple/friendship group.
Stage in the dementia journey- are they able to remain independent at home?
Accommodation- is the living environment practical and safe?
Pets- are there any dependent pets to take care of?
Local environment- is it easy to get about? Are there neighbours and friends to support?
Companionship- is there someone else at home, is it practical for them to act as carer? How close are other family members?
Legal and financial – has an LPA (lasting power of attorney) been appointed for finance, health and welfare? Do you need financial advice around future care options?
Future care planning – is the person with dementia able to record their own wishes and choices for their future care?
You can also get support directly from the Wayfinding Team, at Sage House, who are on hand to help with navigating the complexities of planning for a future with dementia.
Once you have addressed the questions above, the next steps will hopefully become a little clearer. There are several options available to support you and your loved ones, and more advanced help is also on hand, as different stages are reached on your dementia journey.
Remaining at home is entirely possible, either independently (initially), with the help of a loved one/s (carer/s) and/or with the support of a Home Care team, who can visit or live with you. There is also the option of a residential care home, or nursing care home, for more advanced nursing care.
We’ve talked a lot about the practicalities of planning for a life living with dementia, but not yet about the emotional care, for both the person living with dementia and their loved ones.
For the individual living with dementia, inclusion and communication are two really important factors, that we’ve touched on. They can also become more difficult as the dementia progresses. As a population we have become very reliant on words to communicate, yet our bodies, expressions and gestures speak volumes. As communicating using traditional methods becomes harder, relying on instinctive interpretations can be very useful.
This is one example of how a family or carer may need to adapt their behaviour to support their loved one living with dementia. Caring for a loved one often generates significant emotional strain and it’s important to use the support available, as an outlet. We said earlier that a dementia diagnosis impacts whole families, we talked about ‘us’. At Sage House, we believe that caring for the needs of the individual, as well as their support network is the key to living well with dementia.
Our Wayfinders can offer free advice and guidance for your whole dementia journey, even from before you have a formal diagnosis. The Wayfinders can also sign post to 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.