The Mind Your Memory Group: A supported self management group for individuals with dementia

Transcription

1 The Mind Your Memory Group: A supported self management group for individuals with dementia January 0 Angela Smith, Specialist Occupational Therapist, Old Age Psychiatry, Royal Cornhill Hospital, Aberdeen Clinical Effectiveness Team, NHS Grampian Correspondence to: Angela Smith Specialist Occupational Therapists Kinord Offices Clerkseat Building Royal Cornhill Hospital ABERDEEN AB5 ZH Supporting quality and safety Quality, Governance & Risk Unit, Produced by the Clinical Effectiveness Team, NHS Grampian, St Martin s House, 8 Union Street, Aberdeen AB 6BB Tel: (04) 493

2 INTRODUCTION The Mind Your Memory group was established following attendance at the Supported Selfmanagement in Dementia Masterclass run in February and March 0. The group was designed to meet recommendations surrounding post-diagnostic information, early intervention and supported self-management within Scotland s National Dementia Strategy (00) (ref ) and Realising Potential (00) (ref ). AIM The group aimed to provide timely information and education to people with mild dementia in order to assist them to manage their condition independently and improve their feelings of wellbeing and control. Topics covered included coping with a diagnosis, mental wellbeing, physical health, nutrition and planning for the future. The remit of the group was: To increase participant s understanding of their condition and how it affects them To provide coping strategies to manage their specific symptoms To maintain or increase confidence, self-esteem and self worth To provide support from others in similar circumstances To provide a sense of empowerment and increase feelings of control over their life OBJECTIVES This audit / service evaluation was completed to examine whether the group was effective in meeting the above remit and to identify areas for development. METHOD AND SAMPLE Referrals were received from the Aberdeen City Community Mental Health Teams, Kildrummy Day Hospital and Lochhead Day Hospital. Inclusion and exclusion criteria are detailed on the referral form (appendix ). Eight referrals were received, three male and five female. A home visit was conducted for each patient to establish suitability for the group, concentrating on whether the individual had insight into their diagnosis. All patients referred were deemed appropriate. The group ran for ten consecutive weeks, each session was ninety minutes in duration. The Warwick Edinburgh Mental Wellbeing Scale (WEMWBS) (appendix ) was completed by each patient during the first and last sessions. A single observation Model of Human Occupation Screening Tool (MOHOST) (appendix 3) was completed for each patient, each week, to monitor their participation. An evaluation form was completed during the final week (appendices 4 and 5). The results of the WEMWBS and evaluation forms were then collated.

3 3 RESULTS 3. Of the eight accepted referrals (three male and five female), six attended week one. One male and one female did not attend. One male patient only attended week one, another male patient ceased attendance after week three. Four female patients completed the group. Figure Attendance Rate Attendance 7 Number of Patients Figure Mean WEMWBS scores pre and post group (n=4) Mean Warwick Edinburgh Mental Wellbeing Scale(WEMWBS) Scores Mean Score Pre Group Post Group 3

4 3.3 Figure 3 Patient Evaluation selection of words to describe the group (n=4) Words selected by patients to describe the group Frequency of Word Selection Enjoyable Informative 3.4 Figure 4 Patient Evaluation (n=4) Number of Patients Positive Sociable Fun Hopeful Respectful Boring Frustrating Negative Patronising Stressful Upsetting Waste Of Time Strongly Disagree Disagree Agree Strongly Agree 0 The information provided was helpful I feel more in control of my life I am more prepared for the future The presenters listened to me 4

5 3.5 Figure 5 Patient Evaluation (n=4) 5 Number of Patients 4 3 Strongly Disagree Disagree Agree Strongly Agree 0 I feel that my contributions were valued It was helpful to meet others with similar problems The top tips sheets were helpful I now know where to get help if I need it 3.6 Figure 6 Carer Evaluation (n=3) Since Attending the Mind Your memory group, I have noticed that my relative is... 3 Number of Responses Strongly Disagree Disagree Not Sure Agree Strongly Agree 0 More confident about their future Generally happier Is communicating more More scared about their future More active Using new ways to cope with their memory problems 5

6 3.7 Question What did you enjoy most about the group? Responses by participants (quotations in full) Very nice and friendly which put you at your ease The openness of the info. Nothing was a bother to the ladies, they could not do enough to help us. Patience, questions always answered, enjoyed our time Hearing about what the other ladies did The short time we had at this great course No complaints! What did you enjoy least about the group? Is there anything you Not really, the numbers seem right would change about No the group? Any other comments? None All or questions were answered clearly and concisely. A great help to us all. A more central location Table Comments by Participants 3.8 Table Comments by Carers Question Following each session your relative was provided with a Top Tips handout. Has your relative discussed the Top Tips sheet with you, and if so, has this information been helpful? Since attending the Mind Your Memory group, have you noticed any significant changes in your relative s behaviour? Would it have been helpful to have had a carer s education session? Any other comments? Responses by carers Yes Yes After prompting. Yes. Not always sure that she got a sheet, at least we could not find one Yes More positive outlook No No Yes Possibly, if prior to the start of the relatives sessions so we knew more about sessions and could have copies of top tips in advance of that class None If carers do not live with relative there are issues with transport to/from service, knowing the content so you can prompt and discuss top tips 6

7 4 DISCUSSION/CONCLUSION 4. Attendance at the group was lower than expected (see Figure ). There was a dropout rate of 50%, with the male participants leaving the group. Attendance stabilised from week 6 onwards with different group members being absent each week for varying reasons, including other appointments and family visitors. Through discussion with one of the male participants, it emerged that his decision to leave the group was due to the talkative nature of one of the female participants and the fact that this made it hard for him to contribute. Poor attendance in week lead to weekly prompt telephone calls from the group leaders to the patients with the most significant cognitive impairment. This appeared effective in improving attendance. 4. The Warwick Edinburgh Mental Wellbeing Scale (WEMWBS) scores improved from a mean of 5 in week to a mean of 58 in week 0 (see Figure ), suggesting an increase in participants feelings of mental wellbeing which was an original aim of the group. Research has found that the mean WEMWBS score for people aged between 55 years and 74 years is 5 (ref 3). Therefore, the post intervention scores demonstrate an increase in scores to above the expected mean for that age group. Due to the small number of participants, this improvement will not be statistically significant. 4.3 The patient evaluation form (see Appendix 4) asked participants to select 5 words from the 4 provided to describe the group. The words were selected to offer both negative and positive descriptions. This questionnaire was designed to maximise the contributions of people with cognitive impairment who may have had difficulty generating words independently. No participants selected the negative words. Sociable, informative, enjoyable and positive were the words most commonly selected (see Figure 3). 4.4 Figures 4 and 5 illustrate the responses provided to the questions within the patient evaluation form (Appendix 4). The options of strongly disagree and disagree were not selected by any of the respondents, indicating a positive evaluation of the group. All 4 respondents rated the statement I feel more in control of my life as Strongly Agree. Respondents also reported that it was helpful to meet others in similar circumstances. This indicates that the group was successful in meeting the aims of improving participants feelings of control and providing support from others. 4.5 Included in the evaluation form were open questions which allowed participants to comment in their own language. Table presents these responses. All comments were positive, with the one criticism being that a more central location would be beneficial. 4.6 A Carer feedback form was also sent to a person identified by the group participant (see Appendix 5). Three questionnaires were returned anonymously. Figure 6 illustrates the responses received to questions 6. The responses illustrate that carers did not observe that their relatives became more worried about their future. The responses were varied, with some answers being very positive and others being either ambiguous or negative. The strongly disagree option was not selected by any respondent. 7

8 4.7 All carers agreed that the Top Tips sheets were helpful, although one participant required prompting to share the sheets with her family. Two of the three carers agreed that a carers education session would have been helpful. One carer felt that this should have been held before the group commenced so that they could discuss the Top Tips sheets with their relative immediately prior to the group and have an understanding of what the group content had been. However, as the Top Tips sheets were generated by the group, it would not be possible to discuss these in an educational session before the group had commenced. 4.8 Difficulties with transport were also raised by one relative. Staff offered assistance to some participants to attend, however it was not possible to offer this service to all due to geographical, time and financial constraints. 4.9 Throughout the group, those who attended were observed to build good relationships with each other and benefitted from meeting others in a similar situation. 4.0 Initial results of the audit were positive. However, the main concern was that the male participants did not attend. As a result, a male only group will be trialled to establish whether this is more acceptable to the men. 4. Financial constraints limit the ability to provide transport to the group and to trial the use of venues within the community, for example community centres. Funding is to be applied for to address these issues. ACTION PLAN. Trial of separate male and female groups. Further evaluation of these groups 3. Run carer education session 4. Apply for funding to develop and evaluate groups further 5. Education sessions for other professionals to raise awareness and increase referral rate ACKNOWLEDGEMENTS Fiona Meldrum, Specialist Occupational Therapist Angela McCalden, Physiotherapist Gillian Archibald, Dietitian Claire Birnie, Social Worker Eimear Cooney, Hannah Dingwall and Helen Cronin, Occupational Therapists REFERENCES/BIBLIOGRAPHY. The Scottish Government. 00. Scotland's National Dementia Strategy. [ONLINE] Available at: [Accessed 4 August ].. The Scottish Government. 00. Realising Potential. [ONLINE] Available at: [Accessed 4 August ]. 3. Ruth Tennant, Louise Hiller, Ruth Fishwick, Stephen Platt,. (007). The Warwick- Edinburgh Mental Well-being Scale (WEMWBS):. Available: Last accessed 0th February 0. 8

9 APPENDICES. Referral Form. WEMWBS 3. MOHOST 4. Patient Evaluation Form 5. Carer Evaluation Form DISTRIBUTION LIST Old Age Psychiatry Directorate Ali Walker, Service Manager OAP Occupational Therapy Jackie Berry, Head Occupational Therapist, Old Age Psychiatry Directorate, Iona Parkinson, Clinical Lead Occupational Therapist, Old Age Psychiatry Directorate John Callender, Chair Clinical Governance Group, Mental Health Janice Rollo, Clinical Governance Coordinator, Aberdeenshire and Mental Health Brenda Lurie, Clinical Effectiveness Team leader, NHS Grampian Jane Fletcher, AHP Mental Health Clinical Lead Susan Carr, Associate Director of Allied Health Professionals 9

10 REFERRAL TO SELF-MANAGEMENT FOR DEMENTIA SESSIONS Appendix This group aims to teach people with a recent diagnosis of dementia the skills to manage their condition and live independently. The group will run for 0 weeks and will cover topics such as memory tips, safety, nutrition, and mental and physical wellbeing. It will be held in the Recovery Resource Centre, RCH. NAME: ADDRESS: UNIT NO: CHI: TEL NO: CONSULTANT: EMERGENCY CONTACT/ NEXT OF KIN: ADDRESS: GPS NAME: PRACTICE ADDRESS: TEL NO: TEL NO: RELATIONSHIP: REFERRER S NAME: CONTACT NO: DESIGNATION: DATE OF REFERRAL: MEDICAL HISTORY: PSYCHIATRIC HISTORY: DATE OF DIAGNOSIS OF DEMENTIA: MMSE/MOCA SCORE: ALLERGIES/PRECAUTIONS: IS THERE TRANSPORT AVAILABLE? YES NO (if yes, please give details) DOES THE PATIENT HAVE OTHER COMMITMENTS? (i.e. day centre) IS THE PATIENT ABLE TO GIVE INFORMED CONSENT? YES NO * Please attach current Risk Summary EXCLUSION CRITERIA: SEVERE COMMUNICATION DIFFICULTIES LACK OF AWARENESS OF OR INSIGHT INTO DIAGNOSIS MODERATE TO SEVERE DEMENTIA PROFOUND SENSORY DIFFICULTIES All referrals to Angela Smith, OT, Central Team. Please see Angela for more information. 0

11 Appendix The Warwick-Edinburgh Mental Well-being Scale (WEMWBS) Below are some statements about feelings and thoughts. Please tick the box that best describes your experience of each over the last weeks STATEMENTS I ve been feeling optimistic about the future None of the time Rarely Some of the time Often All of the time I ve been feeling useful I ve been feeling relaxed I ve been feeling interested in other people I ve had energy to spare I ve been dealing with problems well I ve been thinking clearly I ve been feeling good about myself I ve been feeling close to other people I ve been feeling confident I ve been able to make up my own mind about things I ve been feeling loved I ve been interested in new things I ve been feeling cheerful Warwick-Edinburgh Mental Well-Being Scale (WEMWBS) NHS Health Scotland, University of Warwick and University of Edinburgh, 006, all rights reserved.

12 Appendix 3

13 Mind Your Memory Evaluation Form Appendix 4 We would find it very useful if you would take a few minutes to complete this feedback form as it will assist us in planning future groups. Strongly Agree Agree Disagree Strongly Disagree. The information provided was helpful. I feel more in control of my life 3. I am more prepared for the future 4. The presenters listened to me 5. I feel that my contributions were valued 6. It was helpful to meet others with similar problems 7. The Top Tip sheets were helpful 8. I now know where to get help if I need it 9. What did you enjoy most about the group? 0. What did you enjoy least about the group?. Is there anything you would change about the group?. Any other comments? Please turn over the page 3

14 Mind Your Memory Evaluation Form Appendix 4 continue What words would you use to describe the Mind Your Memory group? Please circle 5 answers. FUN UPSETTING BORING SOCIABLE RESPECTFUL HOPEFUL INFORMATIVE STRESSFUL PATRONISING WASTE OF TIME FRUSTRATING NEGATIVE ENJOYABLE POSITIVE We hope you have enjoyed attending the Mind Your Memory group. Thank you for taking the time to provide us with some feedback. Angela and Fiona 4

15 Appendix 5 Mind Your Memory Carer Feedback Form Your relative has been attending the Mind Your Memory group at Royal Cornhill Hospital for the past ten weeks. We would be grateful if you could take a few minutes to complete our Carer Feedback Form and post it back to us in th stamped addressed envelope provided. Since attending the Mind Your Memory group, I have noticed that my relative is Strongly Agree Agree Not Sure Disagree Strongly Disagree. More confident about their future. Generally happier 3. Is communicating more 4 More scared about their future. 5. More active 6. Using new ways to cope with their memory problems 7. Following each session your relative was provided with a Top Tips handout. Has your relative discussed the Top Tips sheet with you, and if so, has this information been helpful? 8. Since attending the Mind Your Memory group, have you noticed any significant changes in your relative s behaviour? 9. Would it have been helpful to have had a carer s education session? 0. Any other comments? Thank you for taking the time to complete our evaluation form. If you have any questions or wish to discuss any issues, please contact Angela Smith or Fiona Meldrum on