Hand in Hand

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Dementia and Alzheimer’s - After the Diagnosis: Getting the Care Right Karen Dodd, PhD is Co-Director of Services for People with Learning Disabilities, Associate Director, Therapies – Learning Disabilities Services and a Consultant Clinical Psychologist, Surrey, England and Borders Partnership National Health Services Foundttion Trust, United Kingdom. What is the challenge? 90% of Catastrophic Behaviours in people with dementia are induced by Carers and the Environment. (Bawley E (1997) Designing for Alzheimer’s Disease. Strategies for creating better care environments.) How can we achieve this? Keep The Person At The Centre • The most important tenet in caring for a person with learning disabilities with dementia is that the needs of the person are paramount. • People with dementia need to have/be: • Stress free • Failure free • Individualised care • Consistency but without time pressures • Staff need to: • Understand and know the person • Understand dementia • Think ahead and predict ‘stressors’ Philosophy of Care • Look at the Person not the Diagnosis • Adopt a flexible approach; Go with the flow! • Use Regular Staff • Promote Failure Free Activities • Take off Time Pressures • Communication and Memory • Daily Living Tasks as Activities • Remain Consistent • Interpreting Behaviours and how to minimise them • Planning for the Future Think About the Present and Future • Be clear about what needs to be achieved. • Consider the person’s happiness, comfort, security and freedom from pain. • Maintain relationships and family involvement. • Change the focus of care to quality of life. • Forget targets! • Think about the environment, where the person lives, day activities, training for staff, baseline assessments. • Think ahead to later stages of dementia including palliative care. Environments and People with Dementia • In planning for future care, it is usually in the person’s best interests to remain in their familiar setting with familiar people and routines. Environments may need to be altered to be: • Calm – noise (internal and external), colour • Predictable and making sense – cues, signposting, no surprises • Familiar – homey, long term memory • Suitably stimulating – noise, views • Safe – access, stairs, hazards Life Story Work • Promotes positive interactions and feelings. • Engages the person, friends, carers and families in its preparation. • Gives the person and their carers a clear individualised picture of the person. • May take the form of a book or photo album, box with objects of significance • Material needs to be well captioned with date, what the event/significance is, who is in the picture etc. • Material should be used frequently and consistently Different Realities • Vital that you do not cause additional stress in the way you respond Hand in Hand Fall 2015, Vol. 19 Issue 3
• Telling the person ‘the truth’ may be very damaging and cause stress and grief • Remember that the person has a short term memory problem and won’t retain what has been said. • Do not believe people who tell you that it is wrong to collude with people with dementia. • Accept that the person may not know who you are and may become confused and distressed when you are doing things with them. • Think about what the person wanted from telling you about the reality. Functions of Behaviours Behaviours can have a variety of functions: • I am confused • It’s too noisy • I want to go somewhere else • Something hurts • I want a drink • I don’t understand what is required of me • I’m scared • No – I don’t want to do what you want me to do • I’m too hot or cold Dealing with Behaviours • Look at the situation through the eyes of the person with dementia • View the behaviour as an attempt by the person to communicate, so interpret using all possible information • Is this an exacerbation or return of previous behaviours? • Is the behaviour caused by a return to a long term memory that is now inappropriate? • Use the simplest solution available to you • Decide if the behaviour really needs intervention. • Environmental alterations can alter behaviours • Decide whose reality you are dealing with. Early Stage Practices • Emphasise maintaining skills. Keep independence by increasing staff supervision and prompting. • Keep changes in environment and daily routine to a minimum. Provide structure and supports to daily routines and to help orientation. • Remind person of the day, time, place, who they are with and what they are doing. • Simplify routines and reduce choices. • Use memory aids such as diaries and timetables. • Keep verbal requests simple and clear, and use additional cues and prompts. • Promote dignity, positive self esteem and well being. • Closely monitor and document changes. Middle Stage Practices • Preservation of function – use favourite activities and strengths, behavioural techniques, reminiscence, reality orientation. • Involvement in stimulating activities • Maintain and review physical health and mobility. • Consider how the person communicates about pain. • Adequate nutrition / hydration. • Protection and maintenance of safety. • Aid with self care. • Strategies to deal with agitation and distress. • Aids and adaptations. • Work with families, carers and other residents. Late Stage Practices • Quality time given to personal care. • Reassuring and confident communication. • 24 hour care – nutrition, lifting and handling. • Skin care and prevention of pressure sores. • Prevention of infection. • Safety issues. • Work with families, carers and other residents re terminal care and death. Pathway – Janicki & Dalton 1999 Potential pathway that someone might follow after a diagnosis of dementia: 1. ‘Dying in place’ where they remain in their own accommodation with appropriate supports adapted and provided. Karen Dodd, PhD will present a number of sessions at DSRF’s 20th Anniversary conference, “From Good to Great,” on the topics of Understanding Dementia in Down Syndrome and System-wide Service Responses for People with Intellectual Disabilities and Dementia. For more information or to register, visit DSRF.org/GoodtoGreat. Hand in Hand Fall 2015, Vol. 19 Issue 3
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