Joanne Challis Smith and Tracie Collett

Ageing and Learning Disabilities: Consideration for professionals of issues affecting individuals, families and systems Joanne Challis Smith and Tracie Collett

Aims of Workshop • Reflective, Reflexive and participatory • The ageing process with learning disability • Cognitive decline and learning disability • Issues affecting the systems of people ageing with a learning disability • Working with the systems within which those ageing with a learning disability are supported • Exercises and reflection

Ageing Processes for People with Learning Disabilities • Issues of ageing the same contexts, personal issues and systems are different • Physical Decline. People with learning disabilities age physically earlier but have normal ageing physical changes. • Palliative Care. Facilitating understanding of end of life decisions, choices and quality of life during illness. (Deb Cooper) • End of working life/activities. As with retirement end of purposeful and contributory activities affects self esteem and sense of social positioning • Bereavement. Growing older involves loss of family and friends close to us often creating accumulative grief • Isolation. Restrictions of physical ability, focused regular activity and bereavement all lead to increased social detachment. • Depression/Anxiety. If issues of ageing not processed/shared adapted to functional mental health problems may result • Cognitive Decline. People with some learning disabilities age sooner (e.g. Down’s Syndrome) the chances of dementia increase with age.

Exercise One • In pairs choose one of the areas outlined • Consider the issues involved for the ageing person with learning disabilities • Loss of systems connections • Impact on psychological wellbeing • Experience of these issues with older people with learning disabilities in your work

Physical Decline • Increased possibility in later life with physical problems. Circulatory system, heart conditions, arthritis, energy levels, speed of processing, terminal illness. • Increased probability that physical problems associated with learning disability will worsen with age • Impact on socialisation as difficulties getting out/ friends also less able • Move to over 65’s services in physical health may mean moving consultants/support systems • Both older adults and people with learning disabilities at more risk of being discriminated against within services through unquestioned bias e.g. “Its due to age”, “It’s part of the disability” • Possible under diagnosis of health issues • Possibility of clients not seeking medical attention for fear of being perceived negatively

End of Working Life • Age limited working environments. Sheltered working environments, placements or physical difficulties may lead to end of regular/routine activities prior to personal preference • Wider cultural narratives of active ageing prevalent and compound impact of loss of purpose where not possible to comply with dominant narrative. Continue to make a contribution to society, keep healthy, keep active • People with learning disabilities often dependent upon others to help facilitate their participation in fulfilling roles e.g. transport, uniform etc. Loss of family supports may make this difficult • Loss of sense of purpose through meaningful activity may be of particular importance for people with learning disabilities in providing a sense of social standing and acceptability. Its loss may lead to lowered sense of self esteem and sense of purpose/motivation • As with retirement loss of working life means loss of meaningful relationships and company. This is a form of bereavement and necessitates process of adjustment and grieving • People with learning disabilities need to be given opportunity, notice and help to plan the end of their working lives. What will replace it how might they keep contacts with colleagues

Bereavement • Social circles may be smaller. Impact of bereavement greater due to co dependent and more exclusive relationships • Lowered possibilities of forming new meaningful relationships. Smaller social circles mean less contacts, lowered social activities mean less opportunity to make new friendships • Losses of life long relationships cannot be replaced. Shared history and experiences unique • Bereavement involves loss of what relationships provide as well as person themselves. Losing main support, routine, home, social care, companionship and possibility of having to adapt to someone new (carer, housemate) • Feelings of anger in grief may result from changes in roles and expectations. Tracie’s example • Greater possibility of multiple losses. Relatives, friends with learning disabilities. • Increased risk of complicated grief reaction. Multiple losses, difficulty understanding death and grief process or expressing emotions • Greater possibility of loss of part of relationship. For example parent, friend suffer stroke, dementia • Increased difficulty accessing appropriate support in grief • Increased difficulty in understanding feelings associated with grief and handling these. Anger, guilt, sadness, tiredness. All can lead to feeling anxious, uncertain and/or be misinterpreted by professionals as depression

Isolation • Possibilities for socialisation decrease. Work, family • Physically becomes more difficult to access company away from home. • Access to social support involves planning. May depend on others who now unable or unavailable to do this for them • Availability of others to facilitate social activities decreases. If close family less physically able or lost • Assumption that person with learning disabilities is in receipt of formal services by others when main supports diminish. Low percentage of people with learning disabilities receive formal care and therefore need to access them, undergo assessment etc. prior to support being available • Greater isolation lowers possibilities of sharing and narrating experiences of growing older with a learning disability. Increases difficulties in creating meaningful understanding of this life stage with this disability • Lowered self esteem and motivation may lead to withdrawal • Lack of awareness of social rules/etiquette may lead those feeling lonely to seek company in ways perceived as inappropriate by others • Possibilities of becoming vulnerable to abuses and ridicule

Cognitive Decline • People with learning difficulties are not more prone to cognitive decline per se • Those with Down’s syndrome age earlier (ageing process is speeded up) • Possibility of dementia at earlier chronological age therefore increases. Demographics • Reasons for difference chromosomal • Possibility of dementia increases with age (and increases relatively) • Given that people with learning disabilities (as with general population) are living longer more probability of dementia being part of their lives • Those with physical problems such as heart conditions will be at greater risk of vascular dementia • Physical effects of ageing e.g. slowed processing may have a more profound impact on someone with learning disability

Issues of Assessment of Cognitive Decline Previous assessment • Access to previous cognitive assessment at baseline maybe difficult • Previous assessment may only have assessed IQ levels for diagnosis of learning disability. Skillful comparison of specific neurological changes and their extent needed Assessment Process • Appropriateness of formal assessment. Levels of anxiety, sensory impairments, attention level • Use of alcohol and prescribed or recreational medication. Longer term and short term impacts • Access to information from carers (formal and informal) regarding perceived changes • Information from carers needs to be longitudinal. Involving consideration of how the person with learning disabilities functioned at different life stages • Forms of communication need to be relevant and specific to the individual.Makaton, sign boards • Relevance of context needs to be considered. Importance of safety and attachment • Impact on everyday life and functioning needs to be considered in relation to previous levels and recent life events • Understanding by assessors of known levels of anxiety and triggers. Need to adapt assess process to account for and minimise • Impact on relationships. Consideration of risk to person with learning disabilities and those relating to

Issues affecting the systems of people ageing with a Learning Disability • Ageing Parents/Siblings/Relatives • People with learning disabilities living longer • Changes to relationships in community living settings • Moves to new housing with family members/parents • Moves to elderly residential/nursing homes

Exercise Three • In pairs choose from either: Formal care system Family care system Community care system • Consider the issues affecting an older person with learning difficulties in the type of environment and relationships they have • Where appropriate relate the ideas back to previously discussed issues of ageing e.g. bereavement, isolation, work, cognitive and physical decline • What might be the areas of difficulty for them • Where appropriate relate the ideas to people/systems you have worked with and discuss • What might be the ideas you would have as a professional as to how to address these

Working with Familial Care Systems • Identification of familial and care resources available for differing ageing, family needs • Connection between older adult and learning disability services • Connection of services serving older parents (gerontological) and grown up children with learning disabilities (adult and learning disability services) • Connection between physical health, learning disability, psychology and mental health systems across age specialisms • Current care planning should include consideration evolving nature of difficulties and predicted future care needs • Planning allows for choice and timely shifts in care provision (e.g. early entry to waiting lists) • Changes predicted, planned and chosen rather than crisis reaction • Importance of acknowledgement of reciprocal family care i.e. person with learning difficulties supporting ageing parents • Person with learning disabilities perceived as a resource particularly where roles decreased • Understanding of the nature of the parent/child relationship, family roles and scripts and exploration of these where appropriate • Thinking of wider family impacts e.g. impact of care giving on marital relationships, neighbours etc • Opportunities to create family/systems narratives of change as well individual ones • Creation of enduring, meaningful connection where change occurs in living arrangements. (Neighbours, community activities)

Working with Formal Care Systems • Working with shared community care homes. • Support around residents becoming frail, ill, or developing cognitive problems, • bereavement issues, • planned moves to residential care • increased meaningful activities if more housebound • Life story books include discussion and processing of present ageing experiences as well as past experience • Working with residential homes for learning disability. • Working with staff around issues of identification of changed needs and abilities • Includes staff understanding and using life story resources and continuing this process • Reflective work with staff around loss of residents • Educational work with staff around issues specific to ageing and to cognitive decline • Working with residents on issues highlighted above. • Working with dementia care homes for older people. • Work on life story and detailed understanding of individual’s needs, • access and privacy for visits from family and friends, • educational work with staff around issues of learning disability care, reflective and educational work with staff around issues of challenging behaviours • Reflective work with staff regarding past life story history and present work and how to use appropriately • Move to formal care may involve loss of connection to previous community. • Neighbours, • friends, • community activities

Presentation of reflective work with formal and informal systems • Female client • Down’s syndrome diagnosis • Living in small residential care setting • Referred via memory assessment clinic • Support to client and her family • Support to formal carers • Reflections

Reflection regarding our own ageing • What we work with may be issues affecting us and our families in the future • Need to reflect upon our own ideas of age and ageing and how they might influence our thinking and work with clients • Spend a few minutes thinking about what stories you have of your own your ageing experience (what is this like presently, what might it be like in the future) • Discuss this with a partner • How does it feel to think and talk about these issues • What prejudice/ageist or cultural ideas do you think might be influencing your ideas • What previous family stories do you think might influence your ideas • How do you think your work with clients might have affected your feelings about growing older • How do you see your connections with family and systems being affected by your growing older • How do you feel about retirement from work • Do you have plans as to what you might do at this time • Are plans for your ageing influenced by relationships with others who need you • How do you feel about this • How do you think your ideas would be different if someone in your family had a learning disability

Joanne Challis Smith and Tracie Collett