Care and support of people growing older with learning disabilities

Ensure that people growing older with learning disabilities have the same access to care and support as everyone else. In line with the Equality Act 2010, this must be based on their needs and irrespective of:

• age

• disability

• gender reassignment

• marriage and civil partnership

• pregnancy and maternity

• race, religion and belief

• sex and sexual orientation

• socioeconomic status

• other aspects of their identity.
  
  [This recommendation is adapted from the NICE guideline on service user experience in adult mental health.]

Ensure that care and support for people with learning disabilities is tailored to their needs, strengths and preferences and is not determined solely by their age or learning disability.

Service providers and commissioners must make reasonable adjustments to health, social care and housing services to ensure they are fully accessible to older people with learning disabilities and their family members and carers, in line with the Equality Act 2010.

Recognise that people with learning disabilities may be carers, but may not see themselves as such. Ask the person if they have caring responsibilities and, if so, offer them a carer's assessment to meet their needs (see NICE's guideline on supporting adult carers).

[This recommendation is adapted from the NICE guideline on older people with social care needs and multiple long-term conditions.]

Support people's communication and information needs in line with NHS England's Accessible Information Standard. This could also include:

• Seeking advice from, or referring people to, a speech and language therapist whenever needed.

• Providing an independent interpreter (that is, someone who does not have a relationship with the person) so that people can communicate in their first language.

• Finding out before an appointment how the person prefers to communicate and receive information.

• Extending appointment times to give more time for discussion.

• Giving people written information (such as appointment letters and reminders) in different languages or in an accessible format of their choice, for example Easy Read, audio books, films or by using online resources such as specialist learning disability websites.

• Providing information on advocacy services and, if the person needs it and consents to it, providing an independent advocate who will attend appointments.

• Using visual aids and short, clear sentences during consultations and conversations.

• Talking to the person's family members and carers if appropriate, and with the person's consent.

Provide people with learning disabilities and their family members, carers and advocates with accessible, tailored information about:

• the range and role of different health services (such as health checks and screening)

• how to access health, social care and support services

• the community and specialist services that are available, and their purpose

• housing options that they could think about for the future

• planning for end of life care

• financial issues, including wills, trusts and benefits

• how to raise a safeguarding concern if they have one.

Social care and primary care practitioners should regularly review the communication needs of people with learning disabilities as they grow older to find out if they have changed. This should usually be when:

• other needs are being assessed, for example, during general health and dental checks

• there is reason to believe their communication needs may have changed.

Health and social care practitioners must understand and take into account the Mental Capacity Act 2005 when working with people with learning disabilities, including:

• assuming the person has the mental capacity to take part in decision-making unless it is established that they lack capacity

• supporting people to make decisions – finding out their views, encouraging them to take part in the decision-making process and ensuring all steps have been taken to help them express their views and make their own decisions

• assessing their capacity to make decisions – this assessment should take place where and with whom the person wishes

• undertaking best interests decision-making when it is established that a person does not have capacity to make a decision. (NICE's guideline on decision-making and mental capacity covers supporting people to make decisions, assessing mental capacity and best interests decision-making.)

Health and social care practitioners should listen to, actively involve and value key members of the person's support network in the planning and delivery of their current and future care and support, if the person agrees to this. Regularly check people's willingness and ability to be involved in this way.

Ask people who they want to involve in planning and providing their support, regardless of whether they have close family. Be aware that some people do not have close family members, friends or carers.

Offer independent advocacy whenever it is wanted or needed by a person with a learning disability. As a minimum, it must be offered as described in the Care Act 2014, Mental Capacity Act 2005 and Mental Health Act 2007.

Find out and prioritise the needs and preferences of the person. Ensure these are not overshadowed by the decisions or preferences of others, including when the person lacks capacity.

Be aware that people with learning disabilities may need support to communicate their needs or retain information. With the person's consent, share information with their family members, carers or advocate, for example about:

• any changes that might be needed to their care and support

• symptoms, management and prognosis of the person's health conditions.

Health and social care commissioners should have an understanding of the needs of people growing older with learning disabilities in their area and know what mainstream and specialist services are available locally to support people as they grow older.

Commissioners should identify the number of adults in their area with a learning disability (and the number of families and carers), and use this information to identify gaps in provision, organise services and plan future provision. This could be done by encouraging GPs to develop and maintain registers of people with learning disabilities and getting information from other support services, including education and the Department for Work and Pensions.

Commissioners and service providers should ensure family members, carers and advocates of people with learning disabilities have access to age-appropriate community support services and resources such as:

• day opportunities

• short respite breaks (both at home and away from home)

• family placements

• support groups for family carers, including siblings, and for older people with learning disabilities who have caring responsibilities

• a single point of contact for practical information, emotional support and signposting.

Commissioners and service providers should provide housing options that meet the changing needs of people with learning disabilities as they grow older. This includes:

• making reasonable adjustments to support people to stay in their current housing as their physical and emotional needs change, for example providing equipment or housing adaptations

• arranging housing for people with learning disabilities who are in unstable housing situations, for example those who are homeless or in temporary accommodation (including people seeking asylum)

• supported living

• residential and nursing care, which reflect gender, sexual orientation and cultural preferences.

Commissioners should make available locally a wide range of family and community support options to meet the needs of people with learning disabilities as they grow older, including the needs of people in later old age, and their family members and carers. These might include:

• ensuring accessible transport links are available to help people access local facilities

• access to advocacy services.

Consider the use of technologies such as telehealth and telecare to complement but not replace the support provided by people face to face.

Commissioners should identify where there are gaps in community optometry, audiology and dental services for people with learning disabilities and address those gaps.

Mental health commissioners should develop protocols to ensure that people with learning disabilities, including people in later old age, have access to mainstream mental health services for older people, including dementia support.

Commissioners and service providers should ensure that people with learning disabilities have equal access to a range of community services that reflect the cultural diversity of the local area and people's hopes, preferences, choices and abilities as they grow older.

Commissioners and service providers should establish links between specialist learning disability services and mainstream older people's services. This could be done by bringing them together to help identify gaps and inform service development, sharing information and learning, and linking into voluntary sector umbrella groups.

Commissioners and service providers should provide opportunities for people with learning disabilities to meet up and socialise, for instance through social clubs and support groups.

Commissioners and service providers should ensure there is a wide range of community-based physical activity programmes available and encourage people to take part to promote their health and wellbeing. Examples include dancing, swimming, bowls, using the gym, organised walks and chair-based exercise classes.

Commissioners and service providers should arrange accessible opportunities for people with learning disabilities to engage in education, employment and volunteering.

Local authorities should consider introducing schemes to make transport easier for older people with learning disabilities. For example:

• providing free travel such as London's 'Freedom pass'

• using minibuses as community transport

• starting 'buddy' schemes to enable independent travel

• developing transport especially for people living in rural locations

• schemes such as 'JAM' cards (Just A Minute) – which can be used to alert transport staff that people have a learning disability

• schemes to help people with a personal budget to travel to activities and self-advocacy groups.

Ensure that all assessments of care and support needs are strengths based, person centred and conducted as early as possible. Follow the recommendations on care and support needs assessment in NICE's guideline on people's experience in adult social care services.

Practitioners carrying out assessments of care and support needs should have:

• access to the person's full history (medical, social, psychological and the nature of their learning disability) and

• an understanding of their usual behaviour.

Practitioners carrying out assessments of care and support needs should be alert to any changes in the person's usual behaviour. This could include how they are communicating or their activity levels, and symptoms (such as weight loss, changes in sleeping patterns or low mood) that could show something is wrong or they are unwell.

Be aware that people growing older with learning disabilities might have difficulty communicating their health needs. When their needs change, think about whether these changes could be age-related and do not assume they are due to the person's learning disability or pre-existing condition (diagnostic overshadowing).

Practitioners carrying out assessments of care and support needs should help people to think about what they want from life as they age. This should include:

• asking people how they would like to spend their time and with whom, and enabling them to explore personal and sexual relationships

• encouraging them to develop support networks and to build and maintain links with friends and family and with community groups – these might include social, cultural and faith-based groups.

Practitioners carrying out assessments of care and support needs should take into account the needs, capabilities and wishes of families and carers. Also take into account that there may be mutual caring between people with learning disabilities, and their family members and carers, who are likely to be older themselves and have their own support needs.

Practitioners must offer people who are caring for a person with a learning disability their own carer's assessment, in line with the Care Act 2014.

Based on assessment, provide families and carers with support that meets their needs as carers (see NICE's guideline on supporting adult carers).

Review the needs and circumstances of carers at least once a year and if something significant changes (see NICE's guideline on supporting adult carers).

Actively encourage carers to register themselves as a carer, for example, with their GP.

Practitioners should carry out regular person-centred planning with people growing older with learning disabilities to address their changing needs, wishes and capabilities and promote their independence. This should include planning for the future (see recommendations 1.4.5 to 1.4.13). Involve their family members, carers and advocates as appropriate.

Include transport needs in people's care and support plans, to help them get to services, appointments and activities.

Local authorities should plan people's care and support in a way that meets the needs of all family members, as well as the person themselves. This might include combining the personal budgets of different family members.

Give help and information to families and carers, including siblings, as part of planning and providing support for people growing older with learning disabilities. For example, tell them about sources of support for people after a family bereavement.

Health and social care practitioners should work with the person and those most involved in their support to agree a plan for the future. Help them to make decisions before a crisis point or life-changing event is reached (for example, the death of a parent or a move to new housing).

Planning for the future should:

• be proactive

• be led by the person themselves with input from family members, carers or advocates as appropriate (regardless of whether they provide care and support themselves)

• involve a practitioner who has a good relationship with the person and communicates well with them

• involve practitioners who have good knowledge of local resources

• take into account the whole of the person's life, including their hopes and dreams as well as the things they do not want to happen

• include considering the needs of family members and carers

• seek to maintain the person's current support and housing arrangements, if this is their preference

• be reviewed every year and whenever the person's needs or circumstances change.

Include as key components of a future plan:

• Housing needs and potential solutions.

• Any home adaptations or technology that may address people's changing needs as they grow older.

• Members of the person's support network (both paid and unpaid).

• Any help the person gives to family members, whether this will continue as they age, and the impact this may have on their health and wellbeing.

• Planning for what will happen if someone who the person relies on dies, or is no longer able to provide care and support.

• Financial and legal issues, for example whether someone has been appointed to have lasting power of attorney for the person.

• The provision of information on wills, trusts and benefits.

• Planning for unexpected changes or emergencies.

• Planning for a time when the person may lack capacity to make decisions themselves, in line with the Mental Capacity Act 2005.

• Consideration of deprivation of liberty safeguards, for instance if planned changes to care or the care environment are likely to increase restrictions on the person.

• End of life care decisions – including where the person wants to be when they die. These decisions should be reviewed at least once a year.

Managers in healthcare settings should identify a single lead practitioner to be the point of contact for people with learning disabilities and their family members, carers and advocates. This practitioner could be a member of the community learning disability team or a nurse with experience in learning disabilities.

Ensure that everyone involved in the person's care and support shares information and communicates regularly about the person's health and any treatment they are having, for example by holding regular multidisciplinary meetings. Involve the person in all discussions.

Primary and secondary healthcare teams should identify at least 1 member of staff who develops specific knowledge and skills in working with people with learning disabilities and acts as a champion, modelling and sharing good practice. Use the expertise of people with learning disabilities to ensure the champion understands their needs.

Record a person's learning disability and any reasonable adjustments in their health records and share this information when making referrals. With the person's consent, make sure all relevant practitioners in community and acute settings can access this. Also record any specific needs or wishes, for example to do with the person's communication or mobility.

Recognise that people with learning disabilities may need additional health surveillance to help them identify and communicate symptoms of age-related conditions.

Offer annual health checks to older people with learning disabilities as long as these are followed by prompt referral to specialist services wherever needed. Explain what annual health checks involve and how to arrange them. Record any actions identified by the annual health check in the person's health action plan.

Offer older people with learning disabilities the same routine screening and health checks as other older people.

Discuss with people the changes that may occur with age. Ask them about and monitor them for symptoms of common age-related conditions or changes in any existing conditions, including:

• blood pressure and cholesterol

• cancer

• dementia (also see recommendations 1.5.36 and 1.5.37).

• diabetes

• dysphagia (difficulty swallowing)

• epilepsy

• hearing loss and sight problems

• incontinence

• osteoporosis

• malnutrition

• menopausal symptoms

• mental health, including depression

• thyroid problems.

During a person's annual health check, give them information about other available services, including a care and support assessment under the Care Act 2014 if they have not already had one.

During a person's annual health check, ask if they are registered with a dentist, how often they see the dentist and check that they understand the importance of looking after their teeth and mouth.

Give people clear, accessible and practical information and advice about keeping well as they grow older. Tell them about, and help them access, services such as breast screening, smear tests, testicular and prostate checks, dental checks, hearing and sight tests, and podiatry.

When designing and delivering breast screening services, address specific barriers to accessing breast screening among older women with learning disabilities, including support to:

• understand breast cancer

• understand the screening procedure

• be breast aware and check their breasts regularly

• understand any information provided

• attend appointments.

Primary care and community services should aim to ensure that older people with learning disabilities can see the same GP and other healthcare practitioners, wherever possible, to help practitioners:

• become familiar with the person's medical history, which the person may have difficulty remembering themselves

• build good relationships and understand the person's usual behaviour and communication needs.

General practices should allocate a named member of staff to remind people with learning disabilities about appointments for screening and health examinations. This staff member should help the person attend the appointment by:

• using each person's preferred method of communication

• giving them information in a way they can understand

• ensuring the person understands the reason for the appointment and why it is important

• finding out their transport needs

• making reasonable adjustments to help the person and their carer or supporter to attend.

If the person is diagnosed with a health condition, give them and their family members, carers or advocate accessible information on the following (taking time to explain it to them as well):

• symptoms and management

• benefits, and potential side effects, of treatment

• how to take their prescribed medicines.

Support people to manage their own health conditions by getting to know them and adapting health advice to suit their personal choices and the activities they already enjoy (for example, playing football).

Commissioners and managers should ensure that support staff have knowledge of oral health so they can support people with learning disabilities to maintain good oral health and access dental services.

Dental practices should ensure their services are accessible to people with learning disabilities, for example by:

• reminding people about their appointments by phone

• sending letters in an accessible format, for example Easy Read

• suggesting that the person brings a carer or supporter with them

• ensuring staff have the skills to communicate with people with learning disabilities and put them at ease.
  
  For further guidance on managing oral health, see the NICE guidelines on:

• oral health promotion: general dental practice

• oral health for adults in care homes.

Hospitals should offer an opportunity for the person and a family member, carer or advocate to visit the hospital before their outpatient appointment to meet the staff who will conduct any tests or examinations, see the equipment that will be used and identify what adjustments will be needed.

When planning a hospital admission, arrange a pre-admission planning meeting, including the hospital liaison team or liaison nurse, a representative of the community learning disability team, the person and their family members, carers or advocate. At this meeting:

• complete the pre-admission documentation, which should include information from the person's hospital passport

• discuss any reasonable adjustments needed, for example, arranging for the person to visit the hospital before their admission to meet the learning disability liaison nurse who will be their contact.

Hospitals should actively encourage staff to use pre-admission documents and flagging systems so that all relevant hospital staff know about the person's learning disability. At discharge, review how well this is working.

Hospitals should develop policies and guidance to enable someone chosen by the person to stay with them throughout their inpatient stay, including overnight.

Hospital staff should continue to offer health and personal care (toileting, washing, nutrition and hydration) to people with learning disabilities even if they have a family member, carer or advocate there to support them.

For further guidance on planning admission and admitting adults with identified social care needs to hospital, see NICE's guideline on transition between inpatient hospital settings and community or care home settings for adults with social care needs.

If the person agrees, invite family members, carers or advocates to pre-discharge meetings, as well as the person themselves.

If the discharge plan involves support from family members or carers, take into account their:

• willingness and ability to provide support

• circumstances, needs and aspirations

• relationship with the person

• need for respite (short breaks).
  
  [This recommendation is adapted from the NICE guideline on transition between inpatient hospital settings and community or care home settings for adults with social care needs.]

Give the person (and their family members and carers) an accessible copy of their discharge plan when they are discharged, and make sure their GP has a copy within 24 hours. Make sure everyone knows what will happen next in the person's care and support.

[This recommendation is adapted from the NICE guideline on transition between inpatient hospital settings and community or care home settings for adults with social care needs.]

After the person is discharged, the hospital learning disability liaison nurse, community learning disability team and primary care practitioners should work together to provide ongoing support to help the person manage their health condition.

For further guidance on discharging adults with identified social care needs from hospital, see NICE's guideline on transition between inpatient hospital settings and community or care home settings for adults with social care needs.

Explain at an early stage to people with learning disabilities (particularly people with Down's syndrome) and their family members, carers and advocates about the link between learning disabilities and dementia. Explain the signs of dementia, how it usually progresses and what support is available. Give people:

• printed information on dementia

• opportunities for one-to-one discussion with a professional

• advice on communication strategies for people with dementia.

Commissioners should ensure information is provided to family members, carers and advocates of people with learning disabilities who are being assessed for, or have been diagnosed with dementia. Consider also providing training. Information and training might cover:

• types of dementia

• how dementia might present in people with different learning disabilities

• care pathways for different dementias

• practical steps to manage daily life

• communication skills

• how to find further advice and ongoing support, including support groups and respite services (short breaks).

Give people growing older with learning disabilities and their family members, carers and advocates accessible, timely and person-centred information about all the potential care options available for end of life care, including hospice services.

Practitioners providing end of life care should spend time getting to know the person to understand their needs. Get to know how they communicate, their cultural background, what they like and dislike, how they express pain, their health conditions and the medication they are taking. Be aware that this understanding will make it easier to identify when the person's health is deteriorating.

Identify who the person would like to involve in creating their end of life plan. Include the person themselves and everyone who supports them in discussions and planning.

Ask the person regularly who they would like to involve in discussions about their end of life plan, in case they change their mind. Do this every 6 months, or more often if the person is close to the end of life.

Make it possible for the person to die where they wish. This might include adapting their home, working with other practitioners and advocates, and talking to other residents or family members about changes that could be made (for example, moving the person to a room on the ground floor).

During end of life care planning, talk to the person and their family members, carers or advocate to understand the person's wishes and any cultural needs at the end of their life.

When providing end of life care, learn from family members, carers or advocates about the person's needs and wishes, including those associated with faith and culture, nutrition, hydration and pain management. This is particularly important if the person has difficulty communicating.

Learning disability providers delivering care at the end of life should work collaboratively and share information with other practitioners and services involved in the person's daily life.

Social care providers should work in partnership with healthcare providers to share knowledge about the person and to develop expertise for end of life care.

Provide training, information and support for family members and carers, for example, in medication, pain, nutrition and hydration, to enable the person to die where they wish.

Make sure that key members of the person's support network have the knowledge, confidence and understanding to communicate with the person about their illness and death. This includes being able to talk to the person about symptoms, pain management and their preferences about resuscitation.

Mainstream end of life care services should make reasonable adjustments to support the person, their family members, friends and carers and other people they live with, throughout palliative and end of life care and bereavement.

For further guidance on end of life care, see NICE's guideline on care of dying adults in the last days of life.

Commissioners and providers of end of life care should recognise the complex needs of people with learning disabilities. They should provide ongoing training for staff to ensure they have the expertise to provide good-quality coordinated care, enabling people to die in their own home or another place of their choice. Training should include:

• having discussions about resuscitation intentions

• finding out and responding to cultural preferences

• recognising pain and discomfort

• managing symptoms, pain and medication

• nutrition and hydration

• understanding communication preferences and being able to communicate – this might include using augmentative and alternative communication methods.

Provide in‑service training for learning disability and palliative care practitioners so they have the skills to support people at the end of life. This might include joint study days and training of professionals by people with learning disabilities and their family members and carers.