Exeter & East Devon discuss the value of sharing a dementia diagnosis.
Our Owner/MD Mark McGlade has led a free Community Talks initiative for many years and continues to find not only engagement, but positive feedback from recipients – whether they are members of the public, volunteer groups, support organisations, businesses or in many cases, fellow healthcare providers looking to grow their knowledge of dementia.
There are some exciting Alzheimer’s treatments on the scientific horizon, but all of these require early diagnosis in order to gain the best results, meaning raised awareness and a willingness for us all to be open, is key.
Those with a new diagnosis of dementia can often feel anxious about their onward journey but it is believed that there can be real benefits to being open about that diagnosis, even though it may be an emotional and challenging conversation to have.
Openness could relieve the ‘weight’ of the diagnosis, as the urge to hide the changes in ability is removed, along with the need for those around you to question what’s happening. Sharing your diagnosis then allows others to make their own enquiries and to educate themselves, without the need to question you or those closest to you.
Home Instead are dementia specialists, with all of our Care Professionals each receiving full dementia training, and with a number continuing their learning in order to specialise in this field. They are fully equipped to support a person living with dementia, and to signpost their loved ones in the direction of trusted advice and guidance, should the need arise.
Think of the positives: sharing a diagnosis will often mean that people can more naturally offer their support. It also allows the chance to discuss how needs might change in the future, and to then make clear how you would want them to be met – including the possibility of additional support in the home perhaps. This can then instigate a more relaxed investigation into what could be the right source of care, rather than waiting for a crisis situation – which is sadly, often the case. There are a wide variety of options available and planning really is the best way to put peace of mind in place.
Of course, as with many other conditions, there are some authorities that you are legally required to notify is you receive a dementia diagnosis, such as the DVLA or car insurance providers, so it’s advisable to tick them off of the list so to speak, sooner rather than later.
If you’re reluctant to share your diagnosis, you’re not alone. Research shows that almost 25 percent of people feel that they aren’t sure how to speak to somebody with dementia. This is a statistic that we at Home Instead are determined to improve, via our Community Talks initiative, which shares not just information about dementia, but importantly, how to kindly care and communicate with someone living with dementia as their journey progresses. It’s a vital initiative, and one that we have shared across communities, for voluntary organisations, in businesses and in healthcare settings too.
Those with a new diagnosis, and those close to them, often relay the feeling of being somewhat overwhelmed by the information that they are then confronted with. A key tip can be to simply write down the facts of your diagnosis; the type of dementia you have, the current symptoms, and how these symptoms are likely to progress.
There is no ‘right’ answer to this, other than to try to be open with yourself about your changing needs and to trust your instincts that the time feels right for you.
Questions may follow, but it can be of real value to share your feelings, remembering to put the responsibility for education firmly in the hands of the other person. The more open you can be about your feelings, concerns, and hopes (because everyone is different) the more likely you are to receive the support you would like from loved ones. Choosing the right place and the right time for this conversation is really important, so select a place that feels comfortable for you and allows you to feel in control.
Dementia can be daunting, but with the right treatment, support and approach, life still offers wonderful opportunities for positivity. Our amazing clients are living proof.
For those looking for details about our free and ongoing Community Talks programme, please contact our Marketing and Community Engagement team on 01395 200600 or email [email protected]
*Alzheimer’s Research UK