Caring roles within the family can change as parents become frailer and the son or daughter with a learning disability takes on a greater caring role. This is often called mutual caring and highlights the interdependence of these families. It also highlights that more people with learning disabilities are becoming carers in their own right and need support in their caring role. These families need support to continue to care, but they also need to be supported to plan for emergencies and the long term future of the person with learning disabilities.
Other family members, particularly siblings, are taking an increased role in the lives of the person when parents die. Their role needs to be acknowledged and valued even if the person with learning disabilities moves out of the family home into supported accommodation.
Families are growing older together
Two thirds of adults with a learning disability live with their families, the majority with their parents. Of these, 40% live with a parent over 60 and 33% live with a parent over 70 years old (Emerson and Hatton 2008). Given the increase in the ageing population the number of people with a learning disability living with a parent over the age of 70 will also rise. Many family carers are caring alone; others are caring for more than one person.
Many older family carers worry that their son or daughter is living a prematurely ‘old’ lifestyle because they share the social networks of their parents. As family carers grow older, and sometimes frailer, their social and support networks shrink exposing them to the risk of growing isolation (Magrill 2007).
In many of these older families the parent carers are becoming increasingly frail and the person with learning disabilities adopts a caring role. There is a growing awareness of the growth of mutual caring or increased interdependence in these families. Many families will need support to adjust to these new roles, which will require services to take on a more coordinated and family focused approach. It is also important that the person with learning disabilities is recognised, and gets support, as a carer in their own right (Foundation for People with Learning Disabilities 2010).
The need to plan for the future remains a priority for all families growing older together. Many people with a learning disability and their family carers face increasing challenges as they age and many continually worry about the future when the family carer is unable to provide care (Walker and Walker 1998). Sustained support is often needed to help families do this (Walker and Magrill 2002). Up to 25% of people with learning disabilities living at home with older family carers are not known to services until there is a crisis (Department of Health 2001). As a result there has been no formal planning for their future care.
A number of people with learning disabilities remain living in the family home when their parents die; more would like to do so. This can be a very vulnerable group if they don’t get the support they need. This is particularly true for people with more moderate learning disabilities who are not eligible for support because they do not meet local social services Fair Access to Care criteria. They can fall through the net of local support services until there is a crisis. This group can be particularly vulnerable to hate or mate crime (Easterbrook 2008).
At present around 12% of adults with a learning disability live with a family member other than their parents (Emerson and Hatton 2008). As more people with learning disabilities outlive their parents the role of siblings and other family members will increase. Often these siblings lack the experience of services that their parents have and will need information and support in their own right.
Bigby C (2000) Moving On Without Parents: Planning, Transitions And Sources Of Support For Middle Ages And Older Adults With Learning Disabilities. NSW/Baltimore: McLennan and Petty Brookes
Cairns, D et al (2013) The need for future alternatives: an investigation of the experiences and future of older parents caring for offspring with learning disabilities over a prolonged period of time. British Journal of Learning Disabilities, Volume 41, 1, 73-82
Cowen, A and Hanson, J (2013) Partnership Working with Family Carers of People with a Learning Disability and People with Autism. Birmingham: BILD
Dillenburger, K and McKerr, L (2011) ‘How long are we able to go on?’ Issues faced by older family caregivers of adults
with disabilities. British Journal of Learning Disabilities, Volume 39, 1, 29-38
Dillenburger, K and McKerr, L (2009) '40 years is an awful long time': parents caring for adult sons and daughters with disabilities. Behavior and Social Issues, 18, 155-174
Magrill, D (2007) Supporting Older Families: Making a real difference. London: Mental Health Foundation
Walker, C and Walker, A (1998) Uncertain Futures: People with Learning Difficulties and their Ageing Family Carers. Pavilion Press. Joseph Rowntree Fund www.jrf.org.uk
Walker, C and Ward, C (2013) Growing older together: ageing and people with learning disabilities and their family carers. Tizard Learning Disability Review, Vol 18(3), pp112-119
Decisions to make, steps to take: A guide to planning long-term care and support for disabled adults and their families (Sense, 2018) - Download PDF here
Good Practice Guidelines In Supporting Older Family Carers of People with Learning Disabilities (2003) www.learningdisabilities.org.uk/publications
Mutual Caring: Multimedia resources (2010) www.learningdisabilities.org.uk/publications/mutual-caring/
Person Centred Approaches and Older Families (2005) http://www.learningdisabilities.org.uk/publications/person-centred-approaches
Supporting People with Intellectual Disabilities who Challenge or who are Ageing: a rapid review of evidence
Thinking Ahead Report (2013)
Thinking Ahead: a planning guide for families (2013)
Organisations and web links
Foundation for People with learning disabilities: www.learningdisabilities.org.uk
Sibs - for brothers and sisters of disabled children and adults www.sibs.org.uk
Real life stories
Bromley Mencap – mutual carers’ project
The Bromley Mencap Mutial Carers' project has changed the life of Andrew Roffey, who says:
“I never expected this project to change my life, but it has. I have a learning disability, and I live with my mum, who has become disabled, and we look after each other.
When mum became unwell, our lives became even harder. Bromley Mencap came to see me and my mum at home. We had money problems, so they made sure we got all our benefits, and the extra money really helped.
I was worried about who to call if anything happened to mum so they helped me write down some phone numbers of people to ring which we kept in a safe place. I felt happier.
My mum is nearly blind now and has bad knees and hands. I couldn’t cook very well and then I went to cookery classes and now my mum and I help each other to cook. I’ve learnt to carry all the saucepans and turn on the oven because my mum can’t see the dials. I do all the hot food as it’s dangerous for mum.
I got advice on travel, and so I now help mum when we go out, as she can’t see the kerb and finds steps difficult. She can’t see the numbers on the bus, and I have to help her get on and off the bus.
They helped mum to read her letters and helped mum get a bath lift. This has made it much easier for me to help mum in and out of the bath. She also referred us to the handy man scheme who have put up stair rails which have made it much easier for mum to get up the stairs and hopefully she now won’t fall.
They also take mum to hospital appointments. They also set up Carelink for mum, just in case she needed urgent help if I wasn’t there.”
The Mutual Carers project provides a unique and innovative service which helps ageing people with a learning disability to mutually care for their elderly parents.
Families with a learning disabled member are at high risk of breakdown. This increases when the parents become elderly and they cannot support themselves or their family member. Their ageing sons and daughters, as people with learning disabilities, also have challenging needs but now play the advanced role of caring for their elderly parents.
Bromley Mencap has developed an innovative approach to help these ‘Mutual Carers’ to remain living together, yet independently, as a family, and avoid institutional care. It meets very important critical needs which, if unmet, can increase family breakdown, by:
• Helping the ageing sons and daughters with learning disabilities to gain independent living skills such as basic cookery and travelling by themselves
• Reducing isolation through social activities where they meet other mutual carers
• Improving health through health checks and support to attend medical appointments
• Increasing income through financial management support and benefits assessment
It also reduces anxieties about the family’s future through emergency planning and wills and bereavement advice.
The project runs two peer support groups – a monthly lunch club for older parents who have a free, healthy 3-course meal and a presentation/talk of their choice and six to eight weeks.
The service has been offered for 12 years, and every year it supports approximately 25 families. It started as a small innovative pilot which is now a successful service, meeting a genuine need. It has also expanded during this severe economic recession, with a 5% year-on-year increase in users, and a waiting list.
This nationally recognised project is the first of its kind, and is a model of excellence and innovation. It has been replicated in Sheffield and Warrington, as well as featured in a training DVD and awareness pack produced for social care professionals by the Department of Health and Valuing People programme. It won the Guardian Public Service Award for Families, Carers and Communities in 2011.
For more information go to www.bromleymencap.org.uk
You can find out more about Bromley Mencap’s work by watching these video clips on YouTube:
There are also these helpful video clips on Person Centred Planning and Mutual Caring at:
A sister's perspective – Saskia's story
My brother, Timothy Baron, is a man with autism, profound learning difficulties, epilepsy and a passion for the Beatles. He will be 58 this year, and was one of the first handful of children to be diagnosed with autism in the UK, back in 1961.
My father now in his 80s is still very involved in Tim’s life, and we both worry about what will happen to Tim as he gets older. He currently lives very happily in a group home with other men with intellectual disabilities and goes to an excellent day centre. He leads a very active life, but we worry about ageing and autism.
We know that among Tim’s peers a few have already died far too young, which is in line with research from a study of 300 people, published in the US. It showed that the death rate for people with autism in Utah was about ten times higher than their neurotypical siblings and cousins during the same time period.
There’s a woeful lack of knowledge about what happens to people with autism as they enter old age. Are they at greater risk of developing dementia early, as people with Down’s Syndrome are? If so, what would be the signs, and where would be the best place for them to live?
We know there are problems with anxiety and depression with high-functioning adults with autism. Is that also an issue for people with autism who have considerable learning difficulties? Are there specific health issues associated with autism and ageing? The Utah study highlights the risks associated with epilepsy, but what are the other aspects of autism that might lead to a premature death? My brother doesn’t tell people he is in pain, and that can lead to physical problems being ignored and turning into a major health issue.
We wonder if some of the physical features of autism burn out with age; Timothy is still very autistic in his rigidity and his communication style, but he doesn’t have the agitation that he had when he was younger. He’s much calmer and easier to be with and rarely gets distressed or angry as he did when he was young. We were talking the other day, and none of us could remember the last time we saw him stim, or flap or heard him shout or hoot. No-one has discouraged such behaviour in Timothy. Do people with autism like Tim blend into the general learning disabled population as they age?
So much research into autism is on causes, diagnosis and early interventions. In a paper last year by Alan Poling and colleagues at the University of Western Michigan, they reviewed 148 intervention trials. They showed that less than two percent of the autistic individuals involved in these studies were over the age of 20. Most of them were between five and ten years old, with the average age being six.
Parents are all too often terrified by the professionals’ mantra that ‘early intervention is key’, and fear that the door closes on autistic learning after infancy. It doesn’t have to. We can keep it open, but we have to put more research effort into finding out what interventions work for adults and how to ensure a good old age with autism.
Saskia Baron is a journalist and television producer. Her documentary, "The Autism Puzzle" aired on BBC4 in 2003 and is archived here:
Michael and Timothy Baron, photo: Saskia Baron
Hft family carer workshops
It is still common to find older family carers in their 70s who are not getting any help with planning for the future, neither are they, nor those they support, being offered options that enable them to reduce or curtail their caring responsibilities. Despite ill health, and even terminal illness, they continue to provide a full social timetable and give support in all aspects of their relatives’ lives. Many believe it is their duty to ensure the wellbeing of their family member and, in the absence of any other offer, they feel they can meet the obligation by continuing to play the same role into the future.
Family carer workshops whether for families at all stages of their journey in supporting a relative with a learning disability or specifically for older family carers - can provide key information and opportunities (along with peer support) to help older families think about the future and choose how to take action that helps them and their relatives.
A recent Family Carer Support Service report on a series of five workshops for older family carers illustrates what can be achieved. The full report is at
Below we summarise one session, entitled "Thinking about the future, emergency planning".
At the start the participants when asked to think about the future their replies indicated the stress they experience:
- Very concerned about what might happen to relative when we’re gone
- Upsetting – feel like other family members will take on the burden
- It’s not other relatives responsibility, they’ve got their own lives to lead
- Worried about how relative will be treated when moved out of the family home and living somewhere else e.g. residential care or supported living
- Winterbourne View – are all places like this?
- Is Council care and support better than private? Most local authority provision is being closed down
- Would things be done the same as I do? Differences of opinion of what is appropriate/standards – e.g. ironing clothes and choice for relative about which clothes to wear etc. – reference to person they know who has changed since living away from family home
Having recently attended a presentation by Christine Towers of the Foundation for People with Learning Disabilities about their resource Thinking Ahead: a planning guide for families, the workshop leader used some of the quotes from families in the Thinking Ahead research to ease the group into talking about their feelings on the future.
As a result group members asked for copies of the quotes to enable them to start conversations with other family members about planning for the future. They had listened with great interest to the quotes from siblings and been helped to realise that other family members might also have similar worries about the future even though they had not discussed these together.
Next, the group did a realistic exercise highlighting the importance of emergency planning, the first of Thinking Ahead’s seven stages of preparing for the future. The exercise involves this activity:
An emergency has arisen, you have no plans in place, you have 10 minutes to tell a supporter the key facts about your relative. Your partner needs to take notes as a guide for the period they support your relative.
Although note takers captured lots of information about the support that was needed, inevitably, some important factors were left out. The exercise emphasised the importance of taking time to create an emergency plan which will be well thought out, and include all important information.
The exercise reminded one family carer of a recent emergency that demonstrated an emergency plan she had in place needed improving. The effects of what happened on the day the emergency took place lasted longer than the day and she believed that had a more detailed plan been in place, there would have been less of a negative impact on her relative.
Information was given out about the local ‘Emergency Care Card Scheme’ and the family members were encouraged to sign up.
Each member of the group was given a copy of Supporting you as an older family carer, (part of the Mutual Caring Project’s resources see below for details) to help them to begin to prepare their own emergency plans. Important considerations included:
- Time frames – what needs to happen straight away; coping for the first two or three days; and working out what needs to happen if the emergency looks likely to cause longer term difficulty
- ‘Cushions’ as described by the Mutual Caring Project - “if you were to fall, the more cushions you have in place, the softer your landing is likely to be!” – such as: list of phone numbers of key people to contact; emergency key holders; mobile phone; message in a bottle scheme; making use of overnight short breaks services; registering emergency plans etc.
As a result by the start of the next session, the workshop leader noted:
- One group member had made an emergency plan and another has updated theirs
- Two had signed up to the local Emergency Care Card scheme
All members of the group feedback that they had found the previous session on thinking about the future very emotional, but useful to get them thinking about practical steps they can take”
For more information go to www.hft.org.uk/Supporting-people/Family-carers/Family-Carer-Support-Service/