Dementia = isolation and loneliness

There are many negative things that happen after a diagnosis of dementia, and many that are ongoing challenges and changes, but for me the most difficult ongoing ones to live with are the isolation and loneliness. So many friends slip away after finding out you have dementia, not because they are bad people, but because of a number of things including fear, ignorance, stigma and not knowing what to expect or how to handle it.  I’d have to say right now in my life, if I didn’t have online friends via my blog and other online forums, I’d feel even more lonely and isolated. I have a few of friends, who do stay in closer contact, but who don’t live close enough or have time to visit, so my days are without social human contact other than the two carers who come twice a week, the conferences and dementia committees and forums I actively choose to attend, and the various medical appointments I have to attend. There are other friends, who do stay in touch, but it is via email or my blog, and although it is supportive to know they have not deserted us as friends, they don’t often visit.

Being younger, means your friends are mostly your age, and therefore are busy with their lives. Almost no-one uses a phone these days, except to send a text message. Unfortunately phone chatter is not so easy for me now, as remembering faces and finding the words is more difficult. On top of that, without all the other communication clues that face to face contact offers, I often cannot keep up with or comprehend the conversations. My dear husband offered to give up work this week to keep me company, but this is not the solution; I believe it is important for him to maintain his professional community as it is a good form of respite, and it is our only source of income. A couple of weekends ago, we went to an engagement party, and although we didn’t stay late, at least we went out. On the way, my husband said how happy he felt to be going out for a change, as it happens so rarely now. Following this I then booked to attend two concerts, probably as a way of assuaging my guilt! I am writing about this simply as a way of expressing how it is, the reality of the world of many people and their families living with a diagnosis of dementia.

6 thoughts on “Dementia = isolation and loneliness

  1. Pingback: Ramblings from the past, as I think about 2017… | Creating life with words: Inspiration, love and truth

  2. oh how i wish i was/were closer to you dear kate, but i am thankful for the times that when we do come to adelaide and have no car you find the time and energy to come out and see us, as im sure you do to. and most times we try and stay with you both, im sure you love this to but it would tire you out and you would never say it does. lol chin up dear one and keep on keeping on. to the moon and back


    • love you to the moon and back too dear friend, and we absolutely honour our friendship with you both, in fact we probably see you guys more than any of our other friends, even though you live more than a 10 hour drive away! xox


  3. This is getting hard for me, my aunty has hidden her dementia for years, my uncle called my parents this week in tears as she has completely gone from functioning to non- functioning and aggressive. Of course neither of them have put ANYTHING in place both have lived in denial and now at the horrible hour my uncle, my father & his sister can not cope. We are now waiting on the outcome of the assessment and then the horrible task of finding a lock up nursing home. She hasn’t changed her clothes now for more than a month and fights with my uncle as she sees him as a stranger :-(. I wish we as a family were engaged from the beginning then it (perhaps) wouldn’t be so hard. But who’s to say….


  4. Thanks for bringing this up Kate.

    I think there are a few different types of loneliness that we can go through …..

    – the physical loneliness – when you have a forever shrinking pool of friends. After 15 years now I have 1 friend and 5 once-a-year acquaintences (you know, the ‘friends’ you see once a year and that don’t return emails or calls)

    – the loneliness of feeling you’re alone with your medical problems – because you don’t know anybody else who has your problems. This is somethign I also go through as I have a rare form of the disease and all I’ve ever been able to do is find people who have one or two similar symptoms but nobody with many more than that.

    – the loneliness in facing your disease “alone” … sure, you have people around you but it’s only YOU who feels and deals with each symptom, each setback ….. each experience

    The above might even be characterised as “existential loneliness” – I’ve felt this in the past, can’t remember when but I have …… but given that some dementia’s are terminal diseases I’m sure that many with dementia will experience this


    Kate – I’m feeling HUGELY HAPPY right now – I typed the above out just from what I know about being lonely………. not having read about it but just typing what I know about suffering etc.

    Then I went looking for lilnks to explain it to you ……. and the FIRST link below from the Bioethical journal is saying EXACTLY what I said …… right down to the 3 points!! Wow …… so over thesse 15 years I’ve actually learnt something and actually remembered enough to be able to just say inteliigent pieces!!! Wow 😉 Shame that it’s only a blog reply that I did well!!! 😉


    Here are some definitions/links to this

    ” From an existential perspective, the lonely individual seeks to grasp some meaning in the face of life’s impermanence, the angoisse of human freedom, and the inevitability of death. ”



    • Well done you!! And it is not a shame yo have replied on this blog… this is the best place for honest and real conversation about dementia, by people with dementia. We are breaking ground together!!


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