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What Is Personhood In Dementia

Isnt Dementia Part Of Normal Aging

What is dementia?

No, many older adults live their entire lives without developing dementia. Normal aging may include weakening muscles and bones, stiffening of arteries and vessels, and some age-related memory changes that may show as:

  • Occasionally misplacing car keys
  • Struggling to find a word but remembering it later
  • Forgetting the name of an acquaintance
  • Forgetting the most recent events

Normally, knowledge and experiences built over years, old memories, and language would stay intact.

Im Still Me With A Few Bits That Are Missing Thats All It Is And Ive Learned To Live With It Mainly Through Becoming Friends With The Likes Of Dori And Chris Because We All Understand Each Other

Yes, there was a certain amount of stigma, and yes, a few friends started to leave me out of things a bit, but would you regard them as real friends if they did that to you? No. Im maybe cooler with them now, or dont bother with them, because they look at you and they think, Not quite a real person anymore, are you? So youre not worth talking to.

But, Im still me. Im still me, with a few bits that are missing thats all it is, and Ive learned to live with it, mainly through becoming friends with the likes of Dori and Chris because we all understand each other. Through lockdown, Ive had the company of these two and other friends. We see each other perhaps once or twice a week on Zoom calls, and its been my lifesaver. Its just made life pretty fantastic for me. I dont have a fabulous lot to moan and complain about.;

Chris Maddocks: I just want to say something about Frances because she wont say it herself. Frances is a wonderful artist. During lockdown, Frances has been teaching other people living with dementia how to paint in watercolor. Shes made such a huge difference to so many peoples lives because its given us that sense of purpose, and shes a very good teacher.

Frances Isaacs: Thats very kind of you, Chris. And no, I wasnt actually going to mention it.;

Being Patient: The three of you are all involved in a network of people living with dementia called the Dementia Engagement and Empowerment Project . How important has DEEP been to your lives?;

Tools For Measuring Person

A variety of tools to assess person-centered care practices currently can be found in the literature. conducted a critical comparative review of published tools measuring the person-centeredness of care for older people and people with dementia. The tools were compared in terms of conceptual influences, perspectives studied and intended use, applicability, psychometric properties, and credibility. Twelve tools eligible for review were identified; eight tools for evaluating long-term care for older adults, three for hospital-based care, and one for home care. One tool, Dementia Care Mapping , was dementia specific. Each tool explicitly aimed to measure forms of person-centered care as perceived by care recipients, family members, or staff. did recommend that their validity, reliability, and applicability be further explored. A brief summary of each tool included in their extensive review is provided below. Although most of them have not been specifically designed for individuals with dementia, their focus on knowing the person, interpersonal relationships and individual autonomy makes them relevant for assessing person-centered dementia care.

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Absolute Personhood In Those With Dementia


GUJHS. 2012 July; Vol. 6, No. 2.

Jennifer Hammer

Department of Psychology, Georgetown University, Washington, DC

I remember my grandfather as a disease more than as a person.; When I was nine, he moved in with family after recently being diagnosed with Alzheimers disease, in my fathers anticipation of his inevitable inability to care for himself. ;Soon, my original naïve enthusiasm for the exciting change sobered into annoyance. ;As his disease progressed, my attitude ultimately progressed to complete emotional detachment from his suffering and utter humiliation at his situation.; As difficult as it is for me to admit, my perception of my grandfather went from a noble patriarch, filled with anecdotes both humorous and vivaciously triumphant, to creature volatile, infantile, and even disgusting.; My reflection of his illness only changed years later; it became one where Alzheimers disease robbed him of his golden years by indiscriminately hijacking his mental functions.; I now know, however, that he lived on, probably suffering more from his granddaughters shame than the atrophy of his brain.


Edvardsson, D., Fetherstonhaugh, D., & Nay, R.. Promoting a continuation of self and normality: person-centred care as described by people with dementia, their family members and aged care staff. Journal of Clinical Nursing, 19, 26112618.

In Closing: Making Recommendations For Quality Care

People taking certain antidepressants are at higher risk ...

What this literature review establishes is that there is nothing clear-cut about demonstrating scientific evidence for complicated, individualized, psychosocial interventions such as person-centered care. Overall, the research has limitations including sample sizes, varied interventions within person-centered care models and finally, a paucity of funding and incentives for psychosocial research. Most certainly, more research is needed to continue to understand how to effectively measure person-centered care, what elements are required to make a difference and how does all of this translate into everyday care delivery practices. However, when examining person centered care through the combined aspects of available evidence , current best practices, expert opinion and common decency, it becomes clear that providing care based on knowing the person within the context of an interpersonal relationship in a way that supports individualized choice and dignity is difficult to argue against. While the evidence in support of person-centered care models and interventions may not be wholly conclusive, there is sufficient evidence to support the following recommendations.

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Citizenship Personhood And Dementia

The conversation around dementia and personhood is rich, deep and ongoing. It is also significantly influenced by cultural assumptions about what it is about human beings that is important. Dementia challenges our cultural perceptions of what it means to be a human being in quite profound ways. In hypercognitive Western societies it is very easy to judge and devalue people on the basis of loss of memory and intellectual and cognitive ability. When people lose their memory it is often assumed that they somehow lose themselves: She is not the person she used to be. I prefer to remember her the way that she was. The problem with this way of thinking is that if someone is not the person they used, to be, then who exactly are they? More importantly, if they are not who they previously were, or how we remember them, then why would we love them? When we begin to think in such ways it can become quite dangerous for people with dementia, something that becomes apparent when we note that having dementia in some countries is an adequate criterion for euthanasia. Having dementia can be a risky business!


From personhood to citizenship

Citizenship and rights

There are three dimensions to citizenship that need to be borne in mind:

  • Duties Duties relate to the responsibilities of individuals to think and behave in ways that respect and ensure the freedom and rights of others. A proper understanding of rights requires a matching understanding of duties.
  • A Person With Dementia Doesnt Always Fit Into One Stage

    Dementia affects each person in a unique way and changes different parts of the brain at different points in the disease progression.

    Plus, different types of dementia tend to have different symptoms.

    For example, someone with frontotemporal dementia may first show extreme behavior and personality changes. But someone with Alzheimers disease would first experience short-term memory loss and struggle with everyday tasks.

    Researchers and doctors still dont know enough about how these diseases work to predict exactly what will happen.

    Another common occurrence is for someone in the middle stages of dementia to suddenly have a clear moment, hour, or day and seem like theyre back to their pre-dementia abilities. They could be sharp for a little while and later, go back to having obvious cognitive impairment.

    When this happens, some families may feel like their older adult is faking their symptoms or just isnt trying hard enough.

    Its important to know that this isnt true, its truly the dementia thats causing their declining abilities as well as those strange moments of clarity theyre truly not doing it on purpose.

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    Chris Maddocks: See the person and not the dementia would be my first tip. Ive been to hospital appointments with my partner, and its a case of, they dont talk to me. They talk to the person that youre with. Now I say, Excuse me, but youre talking about me, so would you talk to me? I can still understand what youre saying.;

    Look at the things that we can still do. All of us have heard, Youve got dementia, you cant learn new things. But actually, we can, and weve proven this by doing Frances watercolor courses. Give us things that we can do, and with young-onset dementia, we still need a purpose in our lives.;

    One of the things that I did when I moved, I did some volunteering work in the local hospice. I used to go and take the patients their meals and take their meal orders and sit and chat with them. That gave me back a sense of purpose because I still have a lot to offer, and I can still help other people.

    The three of us on this call today, we like to help other people, and we can still do that. We still got an awful lot to give. The medical health professional should try and help us to see that, and say, You have this diagnosis, and there may be things you cant do. However, theres lots of things that you can do.

    The interview has been edited for length and clarity.

    Alzheimers Research Uk Explain ‘what Is Dementia’

    Understanding Dementia: What is Dementia?

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    Early-onset Alzheimer’s a form of dementia can show up in small ways once a person nears middle age. It might begin as forgetfulness that can easily be overlooked. Dementia charity Alzheimer’s Research UK elaborated on memory issues. “This may include forgetting messages or recent events that would normally be remembered, or repeating questions,” the charity noted.

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    Dementias Given Me Wings Its Given Me Permission To Be Me Obviously You Dont Wish To Have Dementia But Im Just Happy To Be Breathing And I Want To Help Other People Know That Its Not The End Of Your Life

    Somebody asked me, Whats the best decade of your life? I said, My 60s. He said, But youve got dementia your 60s. I said, Yes, and Im happier now than Ive ever been.;

    Dementias given me wings. Its given me permission to be me. Obviously you dont wish to have dementia, but Im just happy to be breathing and I want to help other people know that its not the end of your life.;

    Chris Maddocks: Weve met friends that we would never have met if we didnt have dementia. Weve got a lovely group of friends. The three of us here and some other women through the DEEP network meet on Zoom. Its a safe place for us. We got to know each other very well when over on our weekly Zooms. We laugh together and we cry together and were there for each other.

    Stage : Mild Dementia

    At this stage, individuals may start to become socially withdrawn and show changes in personality and mood. Denial of symptoms as a defense mechanism is commonly seen in stage 4. Behaviors to look for include:

    • Difficulty remembering things about one’s personal history
    • Disorientation
    • Difficulty recognizing faces and people

    In stage 4 dementia, individuals have no trouble recognizing familiar faces or traveling to familiar locations. However, patients in this stage will often avoid challenging situations in order to hide symptoms or prevent stress or anxiety.

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    Relationships That Sustained Personhood

    A major finding was that close emotional bonds between family carers and persons with dementia and professional relationships between caregivers and persons with dementia sustained personhood. The care provided met the criteria of person-centred care as defined by Brooker in the VIPS framework.

    Close emotional bonds

    Close family bonds were characterised by mutual affection, trust and respect. Family carers were committed to help ailing relatives. This was seen as an obvious duty and not an issue that was debated within the family. Family members knew each other well and had often lived with the person with dementia for many years; their life histories were intertwined and they had many shared memories. Family represented belonging, security and well-being. Caring activities were defined as a logical extension of family relationships.

    Interdependence strengthened family cohesion and the norm of reciprocity was a motivating force. Some family carers said that the person with dementia had helped them in the past and now they saw it as their duty to repay the support they once had received. Role reversal could none the less be a challenge and required adjustments in relationships.

    The daughters presence made Mrs. I feel secure as illustrated in the following quote:

    Professional relationships

    Assessment Of Confidence In The Review Findings

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    Appraisal of review findings. This review will use theGRADE CERQual approach, to appraise the review findings, which involves examining four main elements: the limitations of included studies, how relevant the studies are to the review question, the coherence of the review finding and how adequate that data is in supporting the review finding. This will include a sensitivity analysis to examine the contribution of the poorer quality studies to the overall findings . The appraisal of review findings will be carried out by one author and reviewed by a second .

    Reporting. This review will be reported in line with the ENTREQ guidelines . A completed PRISMA-P checklist is available as.

    Dissemination of findings. Findings will be submitted to a peer-reviewed journal for publication. The findings will also be integrated into a wider study being conducted at NUI Galway, also funded by the Health Research Board of Ireland , on resource allocation processes in dementia care provision. The findings will also be shared with stakeholders, including people with dementia, as part of the commitment to Public Patient Involvement at the Centre for Economic and Social Research on Dementia in NUI Galway.

    Study status. This study is currently underway. Title and abstract screening has taken place. Full-text screening is ongoing. Data extraction has not yet taken place.

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    Stage : Moderately Severe Dementia

    When the patient begins to forget the names of their children, spouse, or primary caregivers, they are most likely entering stage 6 of dementia and will need full time care. In the sixth stage, patients are generally unaware of their surroundings, cannot recall recent events, and have skewed memories of their personal past. Caregivers and loved ones should watch for:

    • Delusional behavior

    We Laugh Together And We Cry Together And Were There For Each Other

    Peer support, in whatever way is best to for you as an individual, is the key thing. We do understand each other because weve got dementia. Sometimes, with your partners, your husbands, your wives, your friends, they dont understand what youre going through in quite the same way. Other people living with dementia get it far better. We give each other advice and we give each other solutions. Weve just got such good, firm friends, and if we didnt have dementia, we wouldnt be friends together.

    Being Patient: What would your message be for healthcare providers to provide better care for patients with dementia?;

    Frances Isaacs: A little less condescension and a lot more kindness. You dont go from being you one day to being a complete lunatic the next day. incremental. Its very slow, but nobody tells you that.

    We all know what end-of-life, dementia patients look like. You think thats your next step and it could be tomorrow. So, you run around like a maniac: Certainly I did, getting my stuff in order, trying to tidy up so the children wouldnt have to be bothered with all my rubbish that I keep.;

    Teresa Davies: The professionals should hand out hope and provide more information of the symptoms, that its not just memory . They give you all these leaflets. But more laymans terms. continuity as well. They send some people out to see you, and then they disappear. Memory clinics need to put you in touch with other people whove got dementia.

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    The Three Of Us On This Call Today We Like To Help Other People And We Can Still Do That We Still Got An Awful Lot To Give The Medical Health Professional Should Try And Help Us To See That

    I was fortunate because ;and I realized I wasnt the only person who was feeling certain things or being affected in certain ways, that other people are the same. That was quite a lifeline to me, because I just felt useless and hopeless when I had my diagnosis, and I lost all sense of purpose in my life.;

    I suddenly thought, I can either sit and watch daytime television every day and vegetate or I can still do something with my life. I decided I would still do something with my life. I started just talking and sharing my story, and I was told that I was very good at putting my story across. A lot of people are ashamed to speak about their dementia, but I thought if I dont speak about it, how can I raise awareness?;

    Being Patient: How about yourself Frances? What were the challenges that you faced after a diagnosis of posterior cortical atrophy?;

    Frances Isaacs: I didnt quite believe it. I just thought it was everyone else around me , but then Ive always been a bit of an off-the-wall character as Chris and Dori well know. The diagnosis was a wake up call, but I was very lucky because where I live, they gave me brilliant advice. They said, Tell everyone that you have dealings with and then therell be more understanding.;


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