Person-Centred Counselling for People With Dementia: Making Sense of Self
People with dementia were identified as a result of their access to statutory services and were selected purposefully to ensure a range of residential arrangements living in own home; accessing some day or respite care services; living in a care home. People whose practitioner felt did not have the capacity to provide informed consent to participate in the research were excluded. Each person with dementia was invited to nominate a family carer and practitioner to be invited to be interviewed too. All interviews were transcribed and subjected to numerous reviews by members of the research team.
These reviews built cumulatively from identifying discrete open codes to an analysis of the meanings of risk embedded within the life situation of participants. The focus of the territory which is contested varies between people, and it is the nature and purpose of the territory as a place that is contested which is of particular relevance for this study.
Five of these contested territories are described in the following section, with no hierarchy of importance intended as each differs in significance for each person: friendships, smoking, going out, domestic arrangements, and occupation and activity. These are described in relation to the lives of four of the participants in the study all names used are pseudonyms. In brief:. She is in her early 60s and has two children. She has a home carer once a week. Margaret nominated her daughter Sarah and her Occupational Therapist to participate in the study.
Martin lives with his wife Jane in a very remote rural area. Martin, who has mild dementia, is in his early 80s and otherwise well, although Jane has some physical health difficulties. However, they manage with no outside help.
Martin nominated Jane and his community practitioner to participate in the study. Jack lives with his wife Kath in their own home in city suburbs and has day care each week. Jack is in his late 70s, has mild dementia and also has other mental and physical healthcare difficulties. He receives day care two days a week and also a companion on a weekly basis. Jack nominated Kath and his Community Psychiatric Nurse to participate in the study.
Mary is in her late 60s and has moderate dementia. She also has other physical health difficulties. She receives daily help with personal care. Mary nominated Peter and one of the day centre staff to participate in the study. The contested territories of everyday life illustrate how aspects of everyday life become places in which the place of dementia and the person with dementia are contested between the individual, their family and practitioners. However, as identified below, these contested territories are purposeful in managing risk.
Mary used the friendships in her life to achieve two things. I am not allowed to go out now unless I have one of my family with me. Whereas before I could go and ring up one of my friends. And I agree with them. Because if anything were to happen to me they would feel it was their fault. However, Jane is starting to feel that their friends are less inclined to meet up, as in the quote below, and is protective of Martin being exposed as unable to manage larger public events with friends:.
Margaret has experienced a contraction of her friendships as a result of her own withdrawal from activities including voluntary work and as a counsellor and as friends have died, resulting in an impoverished experience for herself:.
I miss sort of stimulating conversation I talk to people on the net, which has been a life saver really. Smoking is one of the reasons why I come to places like this day centre. It gives me other female company and we can have a laugh, we can discuss things.
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Sometimes I make them laugh. I come out with some daft things.
Person-Centred Counselling for People with Dementia
I can have a cigarette and discuss things. Moreover, smoking was a territory of her life that was highly contested by her partner Peter, something that Mary was well aware of and she had adapted her behaviour to avoid his censure:. He gets on at me, so I normally do it smoking when he goes shopping or I might at night when he might have gone out.
Peter was anxious to explain in his interview that he not only regarded smoking as one of the causes of her stroke but that he had reason to be concerned for her welfare from continuing to smoke:. Dressing gown, full of holes here.
Person-Centred Counselling for People with Dementia
Interestingly, in terms of the practitioner interview, smoking did not appear in the analysis of perceived and assessed risk factors. Going out, whether on foot or by car, was invariably a territory that was contested and which raised many challenges for people with dementia and those who cared for them. For example, as well as smoking described above , going out was another activity disputed between Mary and Peter and which she perceived as necessary to retaining her identity:. I miss doing things most women do, go shopping.
Now and again I sneak out But I cannot possibly take a wrong turning where we live. So I felt that her choices were limited and most of the choices in what she wanted were being made by Peter, her partner. Margaret, like Mary, has mobility difficulties that are not related to dementia.
The part that going out plays in maintaining friendships was also experienced by Jack who enjoyed amateur dramatics and had hoped to transport his fellow actors:. As far as the driving was concerned, I lost my orientation. I kept getting lost in other words. I was on the point of getting a minibus to take people Jack also experienced some attention by staff in the day centre to his mobility and movements, which he resented a little:.
Well stepping out of the building. I wanted to get some fresh air. Anyway, they found somewhere I could sit, which solved that problem.
Danuta Lipinska on person-centred counselling for people with dementia
For Martin, driving remained an important part of his life since he and his wife lived in a very remote area without access to shops or other facilities without driving. Not kill him but I think that would be terrible! ACP in dementia is often not done or started too late and our recent review resulted in the development of an evidence-based guideline on ACP in dementia major gap in current practice is the lack of good tools that people with dementia and their caregivers can use to start thinking about ACP.
With family carers and people with dementia in various stages of their illnesses this ESR will develop and evaluate an interactive ACP website, and perform a feasibility trial to compare the website with face-to-face ACP conversations with clinicians. Expected Results: The website will include information about the disease, reflective questions for people to consider, links to advance directives, case-based videos, etc. The input from PWD themselves will ensure the website is user-friendly, accessible and person-centered.
We will evaluate experiences of PWD and their family with using the website for feelings of mastery, security, mood, hope. Objectives: Little research has addressed the acceptance and adoption of AAL technologies into everyday life for people with early onset dementia under This study will characterise the implementation processes from the perspective of the user and will be conducted as a qualitative longitudinal, ethnographic study across Europe.
This includes a literature review of relevant elements of micro implementation processes linked to the experience of usefulness and successful incorporation of AAL technology as well as qualitative interviews and observations while using AAL technology over a period of 9 month. Expected Results: Insights into the understanding of the use and utilization of AAL technology and their impact on social interaction, participation and the role of the family caregiver and a better understanding of requirements of AAL technology to fit well into habitual practices, routines and cultures how to generate positive emotions; being user-friendly, adaptable and manageable; and engage carers.
Planned secondment s : Two of 3 months each. The first in year one with AE to develop the longitudinal case study and to gain better understanding of dementia activities for people with dementia and lay persons. The 2nd secondment with Silverfit an industry partner to gain better understanding of AAL technology. Maastricht University, Netherlands.
Project: Acceptance and Commitment Therapy in daily life for carers of people with dementia. Objectives: Caring for a person with dementia is associated with emotions, difficulties, demands, and losses that are to a large extent unchangeable. There is an urgent need for interventions that promote the ability to manage life in dementia, by focusing on the acceptance of, and adaptation to adverse external and internal experiences. Acceptance and Commitment Therapy ACT could increase the acceptance of negative feelings and thoughts related to caregiving and to help people with dementia and their caregivers find ways to live their lives, according to their wishes and values.
ACT addresses an important social health concept focusing on positive characteristics and capacities, rather than deficits. The project aims to extend ACT to everyday life by integrating momentary assessment technology in the therapeutic process which could; help to adopt the skills of ACT during daily life and apply them effectively when encountering daily challenges, and promote awareness of internal and external experiences and the relationship between experiences and context. Wearable technology will explore daily stress levels in caregivers.
The extended ACT program has already shown to be promising in mental health care patients. The first in year one to VUB-BE to exchange knowledge on momentary assessment technology, the second in year 3 with technology partner Silverfit. Project: Cost and effectiveness evaluation of FindMyApps, a tool to find usable apps for self-management and social participation in dementia.
Expected Results: It is expected that people with dementia who use FindMyApps regularly will participate more frequently in social and meaningful activities leading to better quality of life compared those who use the tablet computer without FindMyApps, or people who do not use the tablet at all.
As FindMyApps is a web based and low cost intervention it is expected to be cost-effective and easy to implement. Based on experiences of users during the RCT process analysis improvements will help optimize its usability. An implementation package and business model will be developed.
IDES, Spain. Project Title and Work Package s to which it is related: Psychosocial Applications of Technology for Health and wellness coaching of older adults with dementia and mild cognitive impairment and their carers in rural areas. Objectives: to develop a proof of concept of a technological platform integrating several innovative digital tools for health and wellness coaching of older adults with dementia and cognitive impairment and their carers, and to study the effects of utilisation of the platform on physical health, mental and emotional wellbeing, activities of daily living, social and cognitive functioning and professional care use.
To involve older adults with dementia and their carers in the design and development of the platform, assessing their satisfaction, the impact of the system in realistic settings, acceptability and usability, to enables them to manage the system autonomously in daily life. Expected Results: An evidence base for the efficacy of a combination of psychosocial interventions, both as a systematic intervention combination for therapies with high level evidence base but low compliance in real life and cost-effectiveness data, and as a pragmatic controlled trial comparing strategies that require efficacy evidence: 1.
Usefulness and effectiveness of personalized recommendations and follow-up to promote physical, cognitive, mental and social well-being. Validation of non-obtrusive technology for physical, cognitive, social and mental well-being. Evidence of user-centred design and innovation, new intuitive ways of human-computer interaction, and user acceptance. Potential cost-effectiveness due to enhanced self-care, life-style and care management. The first in year one with VUMC months to ascertain the feasibility of applying this platform to dementia Meeting Centers and the second in year 3 with MindTech UoN to assess the feasibility of the platform and its applicability in the UK.
Project Title: Design, development and testing of a low cost pet-like care-bot.