Strategic Planning for Ageing & Dementia at the Daughters of Charity

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1 Models of Good Practice in Health and Social Support for Ageing People with ID Strategic Planning for Ageing & Dementia at the Daughters of Charity Professor Mary McCarron Head of School of Nursing and Midwifery, Trinity College Dublin Policy and Service Advisor on Dementia Daughters of Charity Service.

2 Ageing Demographic: NIDD Data on Ageing Trends Percentage years and over Under 35 years 28.5% were aged 35 years or over in % in % in the Almost 50% of people with a moderate, severe or profound intellectual disability were aged 35 years or over in 2009 (Craig, S 2010)

3 Living situations Between No change in no. living at home (20%) Growth in those >50 years in community group homes (+33%) Growth in those living indep/semiindependently (+56%) No. in nursing homes up by 129% (Craig, 2010)

4 The Daughters of Charity Service Provides a wide range of supports to persons with a moderate, severe and profound intellectual disability in the Dublin, Limerick and Tipperary regions. Commitment to: The development of the whole person. The involvement of parents, families and the wider community. The education and development of staff and collaborators. An efficient management structure. Residential care is available through houses in the community, centre based accommodation or purpose built accommodation within the grounds of some centers.

5 The Challenge of Dementia: Longitudinal (12 year) follow up of a sample of older women with Down syndrome at the Daughters of Charity Service 77 people with Down Syndrome; All Female Moderate ID (62) Severe (15) > 35 years at first assessment (1996) 64 (83%) developed dementia; 13 (16.9%) no dementia Mean age of dementia diagnosis was 55.1 years (SD= 7.2) Range: Persons with Dementia were significantly older than persons without dementia 52.1 years vs years (t=3.5; df = 75; p= 0.001)

6 Longitudinal (12 year) follow up of a sample of 77 older women

7 Risk of developing dementia by age

8 Health co morbidities in persons with and without dementia

9 A Strategic Challenge Changing Demographics Ageing population with Down syndrome Challenges to the current service model A need to restructure residential and day programs A need to up skill staff at all levels in the organisation to respond to changing needs End of life care concerns

10 Will we hope that challenges go away or will we rise to those challenges? Complacency: Insufficient attention to wonderful new opportunities and frightening new hazards. We continue with what has been the norm in the past. False Urgency: We scramble: running from meeting to meeting, preparing endless PowerPoint presentations & agendas with long lists of activities; sprinting, meeting, task forcing, e mailing a howling wind of activity..but is that all it is??? a howling wind or, worse yet, a tornado that destroys much and builds nothing.. True Urgency: not driven by a belief that all is well OR that everything is a mess but, instead, that the world contains great opportunities AND great hazards; not created by feelings of contentment, anxiety, frustration, or anger, but by a gut level determination to move, and win, now.

11 We chose a True Urgency Philosophy A real sense of urgency is a highly positive and highly focused force. It naturally directs you to be truly alert to what s really happening, it rarely leads to a race to: deal with the trivial, pursue pet projects of minor significance to the organization, tackle important issues in uninformed, potentially dangerous ways. Kotter, 2010

12 The need for a strategic plan Knowing the mix of services needed and how they will change over time Determining the best location for services Being clear about what we are trying to achieve with the services we provide Developing sustainable services Developing dementia specific day and residential programmes Developing a Strategic Plan on dementia care

13 Approaches to Strategic Planning 1) Goals based planning: most common and starts with focus on the organization's mission (and vision and/or values), goals to work toward the mission, strategies to achieve the goals, and action planning (who will do what and by when). 2) Issues based strategic planning: often starts by examining issues facing the organization, strategies to address those issues and action plans. 3) Organic strategic planning: might starts by articulating the organization's vision and values, and then action plans to achieve the vision while adhering to those values.

14 Strategic Analyses Critical to the strategic planning process is a thorough strategic analysis However often planners decide to plan only from what they know now. This makes the planning process much less strategic and a lot more based upon guesswork.

15 Developing an issue based Strategic Plan Comprehensive strategic analysis Ageing demographics Current and predicted prevalence of dementia Analysis of Staff training and support needs Focus group interviews with staff, clients and family members Formation of a strategic planning working group Creating a Vision and Explicit Mission Development of Dementia Specific Strategic Plan + Business Plan

16 STRATEGIC ANALYSIS: DEMOGRAPHICS OF THE SERVICE

17 Profile of Residential Population(Dublin) Age Total Mild Moderate Severe Profound Total

18 Profile of Persons with Down Syndrome (Dublin Service) years 65 >55 years 29 <35 years 11 Total number with DS= 105 Mean age 48 years

19 Dementia in Community Services 31 group homes, 25 (81%) had people with DS, 11 (35%) had people with dementia 11 homes in CRS already caring for persons with dementia for an average of 5.3 years 12 additional (39%) homes had people with DS over age 35 without dementia but at high risk. 23 homes were dealing with or would soon deal with dementia issues 5 Homes supporting 2 or more persons with dementia

20 Dementia: A growing concern 28% of residents with Down syndrome in CRS either had dementia or a dementia diagnosis was being queried 37% of CRS clients with DS it was estimated will have dementia 5 years from now 48% of CRS clients with DS it was estimated would have dementia within 10 years

21 A Continuum of Services: Key Questions for Consideration Is the commitment of the Daughters of Charity to support Ageing in Place? How will planning and initial service delivery for persons with dementia be supported? In the pursuit of quality care (while recognizing fiscal realities) will one campus or the entire service be redeveloped to be ageing and dementia ready and supportive? If one campus or within campus facilities are redesigned for dementia care who will be targeted, at what stage of care needs, for what programming purposes?

22 ENGAGEMENT OF STAFF, CLIENTS AND FAMILIES IN STRATEGIC PLANNING

23 Strategies for Engagement A strategic planning group included key representatives from all levels of management, multidisciplinary team members and administrators from residential and day services. A detailed questionnaire elicited staff training needs and to gain understanding of the challenges and suggestions for developing care for persons with dementia was sent to all staff Focus groups were held with families and clients

24 Achieving Goal Clarity Exercise 1 In responding to the needs of persons with dementia in your area identify: 1. What do you want that you don t have (Achieve) 2. What do you want that you already have? (Preserve) 3. What don t you have that you don t want? (Avoid) 4. What do you have now that you don t want? (Eliminate)

25 Consumer Feedback: Summary WANT BUT DON T HAVE An environment to support diminishing skills Staffing levels to deal with changing needs when they become more dependent Specialist Nursing care WANT AND ALREADY HAVE Ageing in place Support Networks, people/friends coming to visit. If they became unwell nurses would have the necessary skills to look after them appropriately.

26 What do you have now that you don't want? Most clients agreed that they wouldn t like to move if they became ill. Moving clients who present with Challenging Behaviour (CB). Some felt that these individual s should not be moved we will do everything we can to care for her here. Others were upset with ongoing CB in their home, and felt it was unfair to them the sick person often annoys us and sometimes she wont get on the bus... It effects our lives and our social life, we can t go out because the staff have to stay with the sick person.we would like to keep her but have someone to mind her..

27 What do you have now that you don t want? Community Clients expressed concern about relocating dependent clients to one specific house in the community. They feel this is an unfair practice on them. Staff have to spend an increasing amount of time with the individual, while the other clients feel left out.

28 What do you want that you already have? (Working Group Feedback). Ageing in Place, providing the supports and services necessary, through adapting work practices and customising buildings. Quality Care promoting and maintaining Best Care Practices on a person centred approach. Promoting Independence affirming the service users strengths, capabilities, skills and wishes. Advisor to the service Dr. M.McCarron. Access to the Multi Disciplinary Team.

29 Working Group Feedback What don t you have that you don t want? Mini Institutions Taking resources from current services to support Dementia. Over Saturation A strategic plan that is not implemented What do you have now that you don t want? Unsuitable Day service Large impersonal units Poor staffing levels Continued crisis admissions Reactive rather than proactive approaches

30 What do you want that you don t have? (Working Group Feedback). Staff consistency across the service. Increased family involvement and education. Ongoing audit of the service. Clinical Nurse specialist/advanced Nurse Practitioner at service level, for consultation purposes. A Dementia Specific Day Service. A assessment/memory clinic service

31 What do you want that you don t have? (Working Group Feedback). Dementia Specific Environment appropriate to the specific needs for those in mid stage dementia, which will promote successful ageing and improve quality of life. Dedicated Dementia Multi Disciplinary Team who will provide a quality professional service. Staff Education and Training at service level, ensuring that staff are dementia aware promoting dignity, autonomy and personal welfare.

32 What do you want that you don t have? (Family Feedback) Education for families re: the progression of the disease. Dementia specific Day service, current services cannot cope with increasing levels of dependence Evening activation to keep clients stimulated On campus bungalows for clients with dementia Retirement village setting Palliative care in the service not to sent to outside hospital or generic service Family support groups

33 Families What do you want that you already have? Ongoing quality care. Staff consistency very important for continuity of care. To remain in the community home for as long as possible. What do you have now that you don t want? Loading of extra work on an already very busy staff. Concern over community GP s not understanding and listening to views of staff/families

34 What would you like to see available in the future and what are your concerns Quality of life Pain free throughout the progression of the disease Not to be physically or emotionally distressed in any way Would prefer to see their family member cared for within the service, and not in a generic care setting or a general hospital To have education on end of life care and would like to be involved in end of life decisions

35 Responding to Dementia Challenges and Opportunities in Care: Survey of Staff Methods Training needs analysis Questionnaire 350 administered to staff in Dublin Service 3 Opened ended Questions designed to elicit views on challenges and opportunities in Care

36 Results and Analysis 272 returned questionnaires, 131 respondents filled out the opened ended questions Quantitative data entered on to to SPSS Vs.11 and descriptive statistics was used to understand training needs Qualitative data entered into*nudist N6 A total of 30 codes were identified, and through a constant comparative method were collapsed into six main categories. The categories were then examined for themes and relationships.

37 Some Results 43% currently working with people with people with dementia 27 out of the 272 had received a full day training on dementia care 9 had received a half day training on dementia care 12 had received a 1 2 hour session

38 Vision: A Seamless Service Key components of a dementia specific service: Early screening and diagnosis and good clinical support through the memory clinic model A continuum of residential options to support the changing needs of persons at different stages of dementia Appropriate day programs Training and education programs for staff, family and peers Research to guide practice and policy

39 Vision without action is merely a dream. Action without vision just passes the time. Vision with action can change the world." -- Joel Barker

40 Action Planning :Deciding who will do what and by when? Without careful action planning, and mechanisms for action it s likely that the plan will end up collecting dust on a shelf! Clarified goals, objectives and developed a business plan Communicate the plan.implement, monitor, evaluate and manage change

41 Location Summary of Implementation Activities Total No. Assessed Total No. with Dementia Con sensus Meeting Family Meeting End of Life Meeting St. Vincent s Centre, Holy Angel s Glenmaroon St. Vincent s Navan Road St Joseph s, Clonsilla Community Services St. Rosalie s Portmarnock Total

42 Implementation Activities (Cont) Staff training: Formal 4 Days Course; offered twice per year with a maximum of 20 participants, from all areas of the service. Formal 1 Day Course; Offered once per year, specifically targeting frontline Nursing staff. Educational Materials to all areas supporting persons with dementia On Site Consultation (offered daily): Communication Environment Understanding Behaviours Feeding/Hydration Issues End of Life Issues Work Placements

43 Implementation Activities (Cont) Peer Training: Usually carried out in the Home Setting and aimed at enhancing understanding of the person s changing personality and declining skills. 14 formal training sessions to date informal chats and discussions routinely occur during visits to homes.

44 Implementation Activities (Cont) Family Information Day/Evening: Twice yearly, focused on ageing in persons with Intellectual Disability. Family Meetings (49 meetings to date): Scheduled after a Consensus Diagnosis of dementia has been agreed upon with relevant members of the MDT Informal meetings to discuss concerns if family members wish to meet End of Life meetings (24 to date) to discuss Agreed Plan of Care at End of Life. Key areas: Resuscitation, Tube Feeding; IV Antibiotic Therapy, Transfer to an Acute Setting.

45 Developing standards for care

46 Ensuring Implementation of the Plan: Some useful tips When conducting the planning process, involved the people who are now responsible for implementing the plan. Ensuring that the plan was realistic. Organized the overall strategic plan into smaller action plans began with the low hanging fruit. Developed action plans specifying who was doing what and by when. Communicated the role of follow ups to the plan Distributed the plan. Identified a key person with ultimate responsibility that the plan would be enacted in a timely fashion.