PhD Project on Family Relationships within the Experience of Dementia

Discussion in 'Researchers, students and professionals' started by LKphdEdinburgh, Jan 26, 2015.

  1. #1 LKphdEdinburgh, Jan 26, 2015
    Last edited by a moderator: Jan 27, 2015
    Dear Talking Point members,

    My name is Lilian and I am a PhD candidate at the University of Edinburgh. My research project is about Alzheimers and its impact on families.

    I am writing to you because many of you are family members that live with, care for and love people with Alzheimer’s.

    My overarching research question is: How do relatives live with the ambiguity and uncertainty of dementia
    I am interested in learning about how families work together to care for someone affected by Alzheimer’s or dementia, and what kinds of challenges you face. I have a specific interest in the difficulties of caring for a relative with memory loss, when shared memories are a crucial part of family relations. I also wish to learn what you think about tests for Alzheimer’s. My project also aims to find out how relatives and carers describe the disease, and what matters most to them.

    I began to pursue research in Alzheimer’s during my undergraduate degree and wrote my Honors Thesis on Alzheimer’s for my first degree. When I was 17, my grandfather was diagnosed with Alzheimer’s, and my family and I cared for him until he passed away. During and after this experience, I became interested in Alzheimer’s beyond my personal experience.

    I would greatly appreciate any feedback from anyone who is a relative of someone with dementia, and/or caring for someone with dementia about their experiences. I feel that people who are actually in these positions have incredibly important knowledge about Alzheimer's/dementia, and I wish to learn.

    Some questions I have are:

    When did you, or your loved one learn about the dementia diagnosis? Did you go the doctor because your suspected? What was the experience like for you?

    Did you, or your loved one do any sort of 'test' for Alzheimer's or dementia? If you do, what did you think of it?

    How have things changed in your family since the dementia started? What's more challenging? Has anything become easier? Or stayed normal?

    Are there certain things that make you feel connected? or disconnected? How do you spend time as a family?

    Where do you find strength in this experience? Do you think you've learned anything from dementia?

    Thank you for reading this, I appreciate your insight.

    PhD Candidate, University of Edinburgh
  2. darcy1

    darcy1 Registered User

    Jan 8, 2015
    #2 darcy1, Jan 26, 2015
    Last edited: Jan 26, 2015

    I would like to take part as am sure it would help in future understanding and knowledge
    Of this horrific disease .My mum has advanced Dementia / Alzheimer's .
  3. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    Snippet: In our family the "children" perform different helping roles, based largely on location, resources and personal skill sets. The different helping roles have been defined by one of the "children" (me) but I think there's a broad consensus that the overall approach is the only way that makes sense.

    The "child" in the same town as the parents needing help inevitably has to handle almost all the day to day emergencies and much of the other support. We, the more geographically distant family members, feel guilty about the weight of the load our sibling is carrying ... but there isn't much we can do to change things.
  4. Hello Darcy1

    Dear Darcy1,

    Thank you very much for your interest! I look forward to reading your feedback.
    Per Alzheimer's Society Terms and Conditions, if you would be so kind as to share your experience with me, it will have to be posted in this post.

    Thank you again Darcy1!

  5. Dear AlsoConfused,

    Thank you very much for sharing your experience. I appreciate your insight.

    If possible, I'd like to ask you a few more questions about how you and your siblings work together. I'm interested in what the helping roles you all have, especially those of you that live farther away. Were you tasked with figuring out what everyone was to do? Was there one big discussion, or smaller ones between pairs of you? Do you still talk about these tasks, or re-work them if the situation with your parent changes?

    Thank you very much,


  6. Padraig

    Padraig Registered User

    Dec 10, 2009
    If it's of any help I've travelled the complete road with my late wife who had Alzheimer's for in excess of 13 years. For most of the journey I chose to care alone especially the final five years. Few are privileged to learn the progression of the disease first hand, not from books or others experiences.
    I could not afford to spend time on a computer or tolerate interruptions in a 24 hour day that entailed washing, cleaning, all house hold duties plus shopping and cooking. There was also having to feed and wash my wife daily during her final five years. Would my experiences be of any use? I still retain video, photos and medical records of our 'journey'.
  7. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    My position in this is that I am supporting my dad from a distance of 150 miles away in caring for my mum in the way that he wishes. I have visited very frequently to the detriment of my family and my job. I have argued with my sisters and when I have had to deliver bad news to them have been blamed for it. We decided quite early on as things seemed to disintegrate between us all that we were not going to let this continue and we would have to try hard to still like each other and always be polite. This has worked. the last thing mum would have wanted was for us to alienate each other because she was ill.

    None of us lives close to any other in the family. We communicate infrequently, the focus of our communication is Dad who needs our phone calls to keep going.

    to start with I went behind dads back to get things organised for him and mum and felt dreadful doing it but was lucky that SS went along with this and would say they were just visiting on the off chance rather than that I had been interfering.

    If you are interested in family relationships I can tell you that I remain the daughter - the child if you like - to my father. His relationship is with my mother and I would not dream of making the decisions for him although I don't always agree with what he does. This also means that he does not consider me to be affected by things, I sometimes think he does not realise I also have feelings. I do not argue with him.

    One positive thing that Alzheimers has done is made him at least speak to me, I could say that we almost became close at one stage when mum was being particularly violent, but this stage has passed and the closeness has gone.
    Prior to dementia i dont think I had ever had a conversation with my dad on the phone, now I ring nearly every day and talk for up to an hour.

    My youngest sister is afraid of him and this has ruled her out of most of the care along with her refusal to learn to drive.
    My middle sister is quite exotic and mixes with important people and therefore very interesting and fascinating, so her visits always cause excitement, she has really started to pitch in properly over the last couple of years. I enjoy her too, this isn't said with resentment!

    As to memory loss, that really doesn't matter to us, partly because we have each other still but mainly because that was almost the least bad of the symptoms mum experienced and the loss of her as a person in the here and now is so awful. I suppose the distorted memories mum had in the early stages caused a lot of upset because we didn't quite know what was going on, and to be told that grandma abused great auntie and that other auntie was chain smoking which is why she died of cancer....among other less repeatable things....was very upsetting, I will never know whether some of this was true now and it has slightly messed up my treasured memories of what seemed like a lovely family. So memory loss, not such a problem, memory distortion - upsetting.

    Enough I think
  8. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    Hi Lilian

    Will get back to you in about a week's time with far more information about dementia and us than you probably want!
  9. Callandergirl

    Callandergirl Registered User

    Apr 23, 2013
    lkphd research o£

    Hi there, My husband was finally diagnosed with Alzheimer's a year ago. This was 5 years after my daughter and myself noticed changes in his thinking, mostly to do with reasoning and organisation. This went on for 2 years before he and a doctor finally conceded that there was a problem. When he finally got to see a specialist who did the lengthy memory test, he scored very highly!! How frustrating for myself and my daughter.

    Socially his skills were mainly intact, and only our closest friends knew he had a problem. Eventually a psychologist tested him and said he had mild cognitive impairment. Mild by her standards, not by ours. No one spoke to myself or our daughter without my husband being present, and so much emphasis has always been placed on his memory skills. Give him a simple problem to solve, or a puzzle requiring simple deduction and his score would be much lower. Even my sister doubted until very recently that he has a problem.

    We had a very happy 38 year marriage, but the last 6 years have been dreadful. It's as though someone has said"You'll be married for at least 42 years, but after 38 years you'll be living with a stranger!!"

    We are now receiving support from a psychiatric nurse. I had to request this help and was asked what did I hope to gain from this. My reply was "Someone to talk to." While we had no diagnosis I could only confide in my closest friends, not my husband's friends or acquaintances in our local community. I worried that if a situation arose which was because of the Alzheimer's, no one would understand and could not make allowances. Everything was under wraps for 5 years and I feel it hasn't helped our relationship because the stress I've been under has been tremendous at times. When I challenged a senior doctor about the delay in diagnosis, he waffled on about the stigma which might affect the patient. I asked him if he thought no diagnosis was helpful to relationships+ and thence to the support needed by the patient from the family.

    If I can help in any other way please ask and I'll do my best. I live near Edinburgh and I have 2 acquaintances who are also in my situation.
  10. Thank you Padraig

    Thank you Padraig, I appreciate your responding to my post.

    If I may ask further, what made you decide to care alone? Is that what you preferred, or were resources for help scarce?
    Were there any ways over the last 13 years of your wife's life that you were able to spend time together in a way that you enjoyed? or was meaningful to you?
    Did you and your wife seek out any tests for Alzheimer's?

    Thank you again for sharing your experience.



  11. Dear Callandergirl,

    Thank you for you openness in describing the difficult journey getting a diagnosis for your father.

    If you're amenable, I have a couple futher questions about your experience. Since the diagnosis, do you feel you can speak more freely about your stresses and life with your husband? Do you feel that you encounter stigma when people know that your husband has an Alzheimer's diagnosis?
    What has the relationship between you and your daughter been like these past 6 years? Has it changed? Did/do you and your daughter have any systems or tools to help improve your experience caring for your loved one?

    Again, thank you Callendergirl for responding. I appreciate your insight,


  12. I will keep an eye out!

    Thank you very much AlsoConfused!

  13. Thank you SisterMillicent

    Dear SisterMillicent,

    I appreciate you writing back to my post very much.
    I hesitate to ask any further questions, in case this is all you wished to share, so I just want to say thank you for sharing your and your sisters' experience of caring for both your mother and your father. If you ever wish to share more about how you and your family navigate your relationships with each other in light of your mother's illness, I would be very interested to hear it. I wish you and your family my best and hopes for as many moments of peace and happiness as possible.

    :) Lilian

  14. Padraig

    Padraig Registered User

    Dec 10, 2009
    Ikphd, Thank you for responding. Interesting questions: what made me care alone? There came a time when I felt I could no longer care for my wife after she had a fall and broke her arm. She walked into the ambulance and hospital and some weeks later was returned home in a wheelchair.
    In addition she had lost most of her speech. For some weeks I attempted to care for her at home, but found it impossible due to the size of our property: a six bedroom house, plus a cottage and land to maintain.
    The decision to place her in a Nursing Home for me was the worse possible decision. I visited daily for up to nine hours. It proved damaging to both our healths. She lost weight, less than six stone, rigidity set in, pressure sore plus she became bedridden with other problems. The stress caused a lack proper sleep. The decision to down size was the best option and have the new property made fit for purpose and take her home and care for her in my own manner. In spite of much objection to my action I insisted on my course of action. Initially she required medical attention from doctors and nurses as it was considered she was dying. At one stage a palliative care nurse arrived to offer help. My response: Thanks but no thanks. Nine months later everyone disappeared and I was permitted to carry on in my own way. She survived a further four years!
    As for enjoying life, many of the those final months and days were filled with many happy memories. Once I managed to return her to physical health her quality of life and mine were assured.
    As for tests, no she did not seek initial tests, nor did I. On reflection I believe we were both in denial, and there is no doubt Alzheimer's was present longer than we were aware as the eventual MRI scan revealed.
    I'd be more than happy to offer you a free download of my book: "Alzheimer's Care My Way". I'm afraid to say I dashed it off in a hurry as I considered it might prove of use to some people.
    The few pictures and medical diary to the rear of the book, sum up the story better than words. Pity I can't share the many videos of her progress.
  15. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    Hiya ...

    Basic roles break down into:-

    - providing emotional support for Dad (carer); Mum (cared for, now at a fairly advanced stage of AD / VasD - still with some insight into her situation at times);each of us siblings; and relatives and parents' friends
    - providing routine and non-routine practical support (admin, research, transport, help with shopping, etc)

    Division of responsibilities / roles - circumstances and different skills dictated initial arrangements. For example, I was only sibling at the start with control over my own time during the working day, full access to computer and a telephone contract that meant I had "free" calls; on the other hand, I live 5 hours away and could rarely visit so my siblings dealt with anything requiring direct contact.

    Having almost fallen into this way of working because it was the sensible way to deal with things, we've continued with it. We make changes at the edges - eg my sister is now able to contact people during the working day so she has just taken on a discrete project to provide Dad and Mum with disabled parking discs.

    I'm professionally interested in the roles people fulfil to progress work and I had more free time to do the thinking than my sister and brother so I did the initial formulation of ideas and put them forward to both for consideration and approval. We make a practice of sharing any important news, views and information about what we've been doing (in advance if possible)- so there's always the option for any of us to say "I'd rather we went about things differently...".

    We've been lucky so far over the 8 years of Mum's illness, we've worked together well even though sometimes we disagree on fairly major issues (eg whether we should now be working towards encouraging Dad to think about finding a care home for Mum).

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