Research on Dementia and Memory Cafés

Research into how effective activities in memory café are for individuals with Dementia when considering cognition and dexterity.

A Research on Dementia and Memory Cafés

Introduction

In understanding the background for the research, a general introduction to the topic in question is relevant in the development of various aspects of the project. The term dementia has been commonly perceived to mean memory loss by the general public and often refers to as senility dementia (REF). However, dementia refers to a group of illnesses that result in gradual decline in the brain memory and its functions, which includes thinking, perception, communication, memory, languages, reasoning, and the ability to function to full capacity (nhs.uk, 2018). Dementia symptoms can be characterized as progressive, with changes in the disease’s dimension reported to have grown from simple to severe. Individuals may experience different specific symptoms depending on which part of the brain is affected. Dementia is incurable, however with the correct treatments and support, individuals are able to lead active lives. (Alzheimer’s Disease and Dementia, 2018)

Individuals living with dementia are often involved in programs such as memory cafés and care centers pathway as a way of making their life more meaningful (Verdelho & Gonçalves-Pereira, 2017). This forms the basis of the research and will focus on the care centers in and around Plymouth with a special interest in memory cafés for the people living with dementia. A critical analysis of the activities happening in and around these centers will be used in determining the extent of the learning and recovery process of the dementia patients, and in determining whether taking part in the activities could help improve cognitive and dexterity, with main focus on cognition in this research.

Background

Dementia is one of the biggest challenges facing society today, impacting millions of lives worldwide through extensive research; the World Health Organization (WHO) has declared that dementia is slowly taking over the charts for the most diagnosed condition over time with forty seven million cases reported worldwide. According to a report done by the Alzheimer’s society, the UK has reported spiraling rates of cases because of an aging population. In years to come numbers are expected to rise to over 1 million by the year 2025. This could soar to 2 million by 2051. 1 in 6 people over the age of 80 have dementia. The report stresses the rapid nature of dementia with estimates placing the current cost of dementia in the UK at £26.3 billion. BBC Plymouth (BBC News, 2018) report that by 2021 over 3500 individuals will be living with dementia in the Plymouth community, they also added that these numbers are expected to increase substantially over the years. With these statistics, it has become impossible to ignore the rampaging effects of dementia in the UK.

Literature Review

Prior research has shown that memory cafés are one of the major contributors to the successful management of dementia patient symptoms. According to research by Nan Greenwood and Raymond Smith (2018), caregivers in memory cafés have played a major role in inculcating a sense of psychological support for those individuals living with dementia at home and their carers. Memory Café groups are run by Alzheimer’s Society trained staff and volunteers with relevant subject, interesting activities and information on local services theses services are funded by charitable organization. Earlier research has shown that through the sharing of experiences in the meetings conducted at the memory cafés, patients, caregivers and medical staff can learn more about the condition. Here, people are allowed to share their experiences from their places of work, homes, and schools for participants who are pursuing an education at different levels. This widely creates acceptance for the people living with dementia.

In addition to this, caregivers have reported that from the knowledge gained from these meetings, they can better handle individual living with dementia (Gappah, n.d.). Active minds has been working alongside the NHS care homes and memory cafe providing resources such as jigsaw, board games, reminiscing cards, music and art activities with has proven to help with cognition. Active Minds 2016 stated they helped to improve the quality of life and wellbeing for over 52,000 people across the world living with dementia. (Active minds.org, 2018) Over the years, memory café meeting facilitators have reported through the Alzheimer’s Society, that their meetings have acted as a gateway for the lost memories of the people diagnosed with dementia, through the following;

     Offering a ‘safe’ environment through channels like art that helps the patients to recall various occurrences in the earlier stages of their lives.

     Group activities which increase the patient’s awareness necessary in their recovering process.

     Offering relevant educational information required in the patient’s day to day coping with dementia (Core.ac.uk, 2018).

A number of regulations exist that guide care giving in memory cafes, for example; The Care Act 2014 relates to people with dementia and provides various requirements for organisations who offer care and support and offers minimum eligibility threshold to those providing such care. This piece of legislation also outlines the general responsibilities of both local authorities and caregivers. (Colibaba, Colibaba, & Gardikiotis, 2015).

All factors considered, previous research has emphasised the role played by memory cafés in the handling of dementia related cases. This research is based on the need to scrutinize the measures employed by memory cafés in determining cognitive and dexterity in dementia patients. The above literature review uses a qualitative approach to analyse the existing research on dementia and memory cafes. Information provided about present studies on the topic can be viewed as reliable as they are commissioned by the Alzheimer’s Society and other reputable organisations.

Aims and Objectives

The research aims to analyse the internal environment of memory cafés, identify the various events that take place and observe, over period of time, the effectiveness of the activities through the following:

1. Keeping track of the research subject and identifying if the activities engaged in, have been effective.
2. Monitoring their progress over time by either asking question or monitoring the subject undertake an activity.
3. Comparing the progress of subjects involved in the activities.

The research will scrutinise the current practices in the memory cafés with an overall interest in improving and creating better platforms toward effective healthcare delivery. The research will identify existing activities and compare their effectiveness in relation to my activity. With the use of both qualitative and quantitative data collection methods, the research will identify any positive outcome in regard to individual cases and highlight current, poorly implemented practices. An overall analysis of the outcomes will be used to suggest possible changes that can be made in the memory cafés to ensure better service delivery altogether. This will also give the caregivers/memory café activities coordinators, an opportunity to reflect on the activities already in place.

The research is fueled by the need for improvement in health care service delivery. The outcomes of this research may support movement around finding more effective and preventative methods in the field of dementia, particularly for those who access memory cafes. 

Methodology

The design of the research will make use of the quantitative empirical approach method for data collection. Empirical is the term used to describe experiences as the foundation or source of knowledge, based on direct experience or observation (Punch, 2013). Quantitative data considers behaviour and interactions between people, as well as people’s perspective of their own situations. The researcher will be using a positivist approach due to the nature of dementia and the fact that each individual is different the test will have to be adapted to suit each person. The method employs both direct and indirect observation to acquire information about the topic of study (Wisker, 2009). The initial approach to the research will involve ‘snowballing’. This sampling method involves primary data sources nominating another potential primary data source to be used further on in the research. This method is based on referrals from initial subjects generating additional subjects. Therefore, when applying this sampling method members of the sample group are recruited via chain referral, the researcher will be selecting different memory cafés as they go along. (Research-Methodology, 2018)

The researcher is hoping to use a three month period to conduct this research. This will mean that the researcher has an adequate and consistent period of time within which to undertake the activity. When formulating my data for reliability and validity I will consider how objective it is and ensure that it is credible. Steps will be taken to ensure the research is reliable through the chosen method of data collection. When I present the research findings, I will use quotes that are the most representative of the research outcomes as this is qualitative research I propose that by using positivism reasoning and using the ‘bottom up’ approach. I will start the research with specific observations gained from the group observation sessions and use them to detect patterns and formulate some hypotheses that may be investigated when I correlate the information gathered this will help me to develop some theories. Mythological contributions in this research will include practical gathering of information. The researcher will randomly choose two individuals from each gender group, from each of the memory cafes to test for effectiveness. The aim of this is that it can be used in the future to try to improve outcomes for individuals with dementia. Critical Social Policy will be my critical framework, using this framework to take into consideration Social Justice within the research,

Techniques and procedures

The research will make use of data collected through interviews and a timed activity. Comparison of the different samples will allow the researcher to report from a point of equilibrium and with all factors considered (Lavrakas, 2008). In addition to other factors, gender balance will be considered in picking different case studies in the effort to curb bias in the overall findings. To eradicate interviewers’ dominance and bias in the response received; the researcher will make use of open ended questions to the carers and the consistent use of activities. This will ensure that the scope of the interviewees’ response is not limited (Fielding, Lee, and Blank, 2016).

Interviews will be conducted to help with the findings of the research. To ensure accountability in the findings, interviews will be conducted with those close to the subject. This will help in creating a wider scope for the basis of the research. Measurng the activity, will be another fundamental data collection method. The researcher will attend various meetings held at selected research points at different intervals and take notes of the events taking place this will last for about forty minutes, four individual cases will be randomly selected in a fair and equal way, from each dementia café to ensure balance in the findings and to rule out possible errors, the researcher will created a Gantt chart with the aim of monitoring the progress. The researcher will tried to factor in for issues that may arise and need more time.

Significance and Limitations

The success of this research could mean better healthcare delivery not only on the patients living with dementia but also patients with other comorbidities and severe diagnosis such as cancer, diabetes, and arthritis. Additionally, this research could be a key factor in facilitating extensive research on all the aspects of dementia related cases. This research could also act as a guideline in the handling of dementia related cases in the future.

The main limitation, however, would be to incorporate the findings of this research in different areas of health sciences. As various aspects of this research are based on the first hand collection of information from different individuals involved with dementia, the findings of this research could be prone to human error. Another limitation can be because of the nature of dementia to do with if the individual has the capability to give informed consent.

Ethical Considerations

According to (Burns & Grove 2011) ethical issues are vital and play a significant part of any research process when dealing with human participants. The researcher will seek ethical approval, the researcher will consider participants by gaining informed consent where needed and confirming that all information gathered from them will remain anonymous as well as confidential. The researcher will adhere to the ethical principles for conducting research with human participants following guidelines the British psychological society by submitting an ethics form. (British Psychological Society, 1993) The principles underlying research are universal and concern issues such as honesty confidentiality and respect for the rights of individuals taking part in the study (Welman et al. 2005).

Appendices

Appendix 1: Ethics Form

Appendix 2 Gantt chart

References

• Activeminds.org. (2018). Social Impact Report 2016 Active Minds. [Online] Available at: https://www.active-minds.org/uk/social-impact-reports/social-impact-reports-2016 [Accessed 26 Oct. 2018].
• Alzheimerswa.org.au. (2018). [Online] Available at: https://www.alzheimerswa.org.au/wp-content/uploads/2017/06/Alzheimers-Memory-Cafe-Guidelines.pdf [Accessed 15 Oct. 2018].
• Alzheimer’s Society. (2018). Dementia UK reports. [online] Available at: https://www.alzheimers.org.uk/about-us/policy-and-influencing/dementia-uk-report [Accessed 14 Oct. 2018].
• Alzheimer’s Disease and Dementia. (2018). What Is Dementia? [online] Available at: https://www.alz.org/alzheimers-dementia/what-is-dementia [Accessed 14 Oct. 2018].
• BBC News. (2018). Study warns people of dementia. [Online] Available at: https://www.bbc.co.uk/news/uk-england-devon-12612155 [Accessed 25 Oct. 2018].
• Burns N. & Grove S.K. (2011) Understanding Nursing research Building evidence based practice, 5th ed. Elsevier, Texas.
• Budson, A. and Solomon, P. (n.d.). Memory loss, Alzheimer’s disease, and dementia.
• Core.ac.uk. (2018). [online] Available at: https://core.ac.uk/download/pdf/71043952.pdf [Accessed 14 Oct. 2018].
• Colibaba, C. A., Colibaba, S., & Gardikiotis, R. (2015). Digital Timeline an Interdisciplinary Approach to Dementia. SEA: Practical Application of Science, 3(1).
• Cox, C. (2007). Dementia and social work practice. New York: Springer Pub.
• Fielding, N., Lee, R. and Blank, G. (2016). The SAGE handbook of online research methods. SAGE.
• Gappah, P. (n.d.). The book of memory. REF
• Greenwood, N., Smith, R., Richardson, A., and Akhtar, F. (2018). [Online] Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5527402/ [Accessed 17 Oct. 2018].
• Lavrakas, P. (2008). Encyclopedia of Survey Research Methods. 1st ed. Sage Publications.
• Mendez, M. and Cummings, J. (2003). Dementia. Philadelphia, Pa.: Butterworth-Heinemann.
• nhs.uk. (2018).  Dementia with Lewy bodies. [Online] Available at: https://www.nhs.uk/conditions/dementia-with-lewy bodies [Accessed 23 Nov. 2018].
• O’Brien, J., Ames, D., and Burns, A. (2010). Dementia. London: Hodder Arnold.
• Punch, K. (2013). Introduction to Social Research: Quantitative and Qualitative. 3rd ed. London: SAGE.
• Research Methodology. (2018). Snowball Sampling. [Online] Available at: https://research-methodology.net/sampling in primary data collection/snowball-sampling/ [Accessed 28 Oct. 2018].
• Verdelho, A. and Gonçalves-Pereira, M. (2017). Neuropsychiatric Symptoms of Cognitive Impairment and Dementia. Cham: Springer International Publishing.
• Welman, J C., Kruger S J & Mitchell B. (2005) Research Methodology. 3rd ed. Oxford
• University Press, Cape Town.
• Wisker, G. (2009). The Undergraduate Research Hand Book. Basingstoke: Palgrave Macmillan.
• World Health Organization. (2018). Dementia: A public health priority. [Online] Available at: http://www.who.int/mental health/neurology/dementia/ [Accessed 18 Oct. 2018].
• Wortmann, M. (2018). [Online] Available at: https://doi.org/10.1186/alzrt143 [Accessed 17 Oct. 2018]

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University of Plymouth Colleges

Application for Ethical Approval of Research

Section 1

Title of Project:   

Research into how effective activities in memory café are for individuals with Dementia when considering cognition and dexterity.

Duration of the Project: 26.04.2019

Aims and objectives of the Research:  

 1. Keeping track of the dementia individual involved in the different activities, identifying if those activities has been has proven to be effective offered within the memory cafés.

2. Monitoring individuals progress over time by observation  and asking  simple question relating to what is done at the start of the session and at again at the end.

3. Comparing the progress of patients involved in different programs within the memory cafés in the efforts to determine treatment reception among different patients.

Brief Description of methods including:

A) Participants (sample frame)

This is a piece of primary research and will be involving human participants.

B)  B) Method of recruitment (sampling methods)

The approach to this research is qualitative done in the form of observation and interviews.

C)   Details of Measures (i.e. how will data be collected)

 Recording taking short hand notes

Section 2

Please indicate how you will ensure this research addresses each of the following:

Informed Consent

Participants will be provided with verbal explanations of the research project, they will be given opportunity to ask questions. Inform consent will be given to primary caregiver if individuals lack the capacity. I will also make sure that they are clear about the project and its potential implications for the participant before any interview takes place and reiterate the information contained in the consent form.

Openness and honesty 

I will be open and honest what and doing by making my intension known

Right to withdraw 

Participants have the right to withdraw at any time but because of the nature of the subject to do with capacity this will be done by the primary care giver. I will have an email address available so participants can reached me.

Protection from harm 

The researcher endeavor to ensure that research participants are protected from undue intrusion, distress, indignity, physical discomfort, personal embarrassment, or psychological or other harm.

Debriefing 

The researcher will let the participants know that she will be around after each session to ask question or discuss any concern.

Confidentiality 

The researcher will seek ethical principles for conducting research with human participants following the guidelines of the British psychological society, the researcher will consider the participants by gaining informed consent if they have the capacity to confirming that all the information gathered from them will remain anonymous as well as confidential.  All data  obtained during this research project will be subject to the provisions of the Data Protection Act and will be stored on the computer of the researcher in password protected files to which only the researcher has access and will not be shared with anyone else.

Relevant Professional Body whose ethical policies apply to this research

The researcher will seek ethical principles for conducting research with human participants following the guidelines of the British psychological society

Declaration

To the best of our knowledge and belief this research conforms to the ethical principles laid down by the University of Plymouth and by any professional body specified above.