Are my relationships with family and friends strong enough to withstand dementia?

The words below resonate so much to me personally, my family, my friends, the dementia community and to others who encounter all sorts of bumps in the road of life.

"My final message to you is whatever your personal battle be brave and face it.

Every single day is precious.

Don’t waste a moment.

In a world full of adversity, we must still dare to dream.?"Rob Burrow, over and out."?

What an inspirational man and what an inspirational family and group of friends. They supported Rob Burrow to live his best life, right up to digging that first piece of ground for the new Motor Neurone Disease Care Centre in Leeds on Monday, the day after he died.

For me Rob Burrow showed and gave people the courage to understand what their personal battle with Motor Neurone disease could be. This was exemplified with a consultant neurologist highlighting in the BBC documentary aired on Monday the massive change she has seen in the last 10 years, where people diagnosed with MND more openly discuss what the future holds for them and their families.

Motor neurone disease, like dementia is neurodegenerative. I feel the dementia community can learn many things from Rob Burrow and his family and friends. But, for me, the most important is the value of a strong and trusting relationship between family and friends when somebody receives and lives with a terminal diagnosis. ?

I have read about, and had the privilege to meet many inspirational people who defy societies perception of how somebody living with dementia should be. However, the reaction Rob Burrow and others with MND are given is so very very different to those role models living with dementia.

Rather than being held up as inspirational, our dementia role models, who work hard to live their best lives and overcome the unpredictable challenges of dementia, are not given the same status. Indeed, many are challenged whether they really have a diagnosis of dementia!

Even worse, some academics criticise them and say they shouldn’t be listened to because their toxic positivity will damage their peers with dementia and their family and friends.

Its these attitudes, which make me anxious if my relationships with family and friends would cope if I had a diagnosis of dementia?

When society and experts give a perspective of dementia where you cannot trust the judgement of how that person is feeling, how do family members navigate their relationship with their loved one with dementia?

Who do they listen to and trust? ?What feelings do they choose to ignore?

I know there are always instances in relationships where we have told white lies and sometimes, where we have told major lies that has caused significant hurt and mistrust. How does this further impact the relationship people with dementia can develop with close family and friends?

In taking over 1600 people on specialist dementia holidays I have clearly seen those with strong relationships built on love and trust who cope much better with the distress of dementia versus those whose relationships are based on companionship and familiarity, where dementia is so much harder to cope with.

As I grow older and consider what if I develop dementia, I am recognising just how important my existing relationships with family and friends will be. These have and always will continue to change, some growing stronger with similar experiences while others grow weaker as new life experiences or tough situations enter people’s life’s.

I can certainly work on my relationships with the people I care about so our relationships are built on a stronger foundation of love and trust. ??

However, without a change in how society perceives dementia I am anxious of the influence the external world’s view of dementia will have on how my family and friends will perceive me.

Will they still trust who I am and what I am feeling? Or will, when the going gets tough just blame the dementia and not listen to my voice or consider my feelings?

What I would love to see is the dementia community being better understood in the way Rob Burrow, Doddie Weir and others have changed people’s perceptions of Motor Neurone Disease.

#DisabilityConversation31 is on the 31st December 2031. Its aim is to make the things that really matter more inclusive. I would like the voices and feelings of people with dementia to be active participants in this, so they are listened to and understood.

I would like to be more confident they, and perhaps I, will be listened to and our feelings considered and trusted. Particularly if we are no longer able to communicate effectively on our own behalf because our dementia has taken that ability away.

In my own small way, I am trying to provide this through our dementia travel advice service. Here we create an environment where we can ?listen to one another's worries and fears to find tailored solutions which enable people to take a well deserved holiday and spend quality time together while they still can.

So, in finishing, I’d like to reiterate the quote at the start

" Whatever your personal battle be brave and face it.

Every single day is precious.

Don’t waste a moment.

In a world full of adversity, we must still dare to dream”

Thank you to Rob Burrow, his family and friends for showing us how we can live our best lives through adversity and giving me the confidence that my relationships with my family and friends can withstand a diagnosis of dementia.

Thank you for those inspirational people who have lived and still live with dementia who are ensuring an open and honest conversation about dementia occurs and for giving me the self confidence I can raise my voice and feelings if I receive a diagnosis of dementia.

Lets make sure dementia is part of the #DisabilityConversation31

If you would like to take advantage of our free 30 minute travel advice consultation then please complete the form on our website and make a booking for a phone or video call.

Take a look at our free booklet to enable and empower the dementia community to go on that well deserved holiday “Holidaying with Dementia – Your 10-Step Approach”

Share your hints, tips and frustrations with your peers by joining our private Facebook Group Dementia Travel and Tourism

Please listen to our latest guest, Zak Marks , on all inclusive solutions pod cast with my co-host Dr Tom Adler