So their life was pretty much curtailed right through their childhood and right up until they were married, they shared their life with ‘Jimmy’. So I think it’s a terrible burden to ask them now to go back and even ask their youngsters to share it. I know he’s easy… but it’s still 24-hour care and their lives will be changed. They can put their youngsters in the car and go wherever they want and do what they want to do, and if they’re looking after ‘Jimmy’ they can’t do that. They’ll have to arrange to take ‘Jimmy’ with them and as they get older, and even when they’re young, ‘Jimmy’ is just going to be an old handicapped uncle… ‘We can’t do it because of him’ and I couldn’t blame the youngsters…” [mother aged 60].

Unpaid carers who provide a secure and familiar environment for people with disabilities are considered “the backbone of community care” ( DHSSPS, 2001 ). In Northern Ireland, there are approximately 185,000 unpaid carers, 25% of whom are providing more than 50 hours of care per week, and almost 39,000 of whom who are aged 60+ (DHSSPS 2006). Approximately 20% of all adults with learning disabilities live with a parent aged 70+ (MENCAP, 2002). Unpaid carers save in excess of £87 billion for the UK economy (Buckner & Yeandle, 2007), a sum that exceeds the total expenditure on the NHS.

Looking at these figures it is obvious that unpaid carers do a tremendous service not only for their own relatives and families, but for the community and the economy which simply could not function without their input. The question is how does the community (and the economy) care for unpaid carers?

A recent study conducted in Northern Ireland asked older parents who care for their sons and daughters with disabilities at home about their experiences, joys and challenges, support from family and service providers, health and wellbeing, and plans for the future (Dillenburger & McKerr, 2009). The study was based on interviews with 29 parents (average 65 years of age) reporting on 27 adult sons and daughters with disabilities (average 33 years of age).

Findings portray high levels of commitment and love for sons and daughters, in the face of often severe disabilities and carers’ ill health. Carers experienced twice the level of psychological stress than the general population and had to make life adjustments that do not concur with expectations of peers who have typically developed adult sons and daughters. They faced worry and loneliness, experienced severe lack of statutory support, and reported near non-existence of help with futures planning. A complex pattern of social and psychological interdependence became apparent. Implications of this research confirm a ticking ‘time bomb’ (MENCAP, 2002) of service needs that have to be considered carefully by policy makers, service providers, and professionals.

“We really should have [future planning] started, personally speaking. You know we keep saying we should do something, we should do something but it seems awful to have to face it… You think, oh God maybe if you ignore it something will just happen and it will all get taken care of… which is a wild thing to do to hide your head in the sand… You work so hard all your life to get him to where he is, to get him to stay at home so why are you stopping now, why can’t you face this like all the rest of the problems, you faced them and you got over them and you dealt with them …but my husband and myself keep saying ‘something will turn up’” [mother aged 60].

The main findings showed that 38% of the carers were over pensionable age of 65 years (range 47-84 years) and the average age of sons and daughters with disabilities was 33.48 years. Caring was a full-time job for 90% of the participants and included physical care in 86% of the cases. Stress levels for carers were twice that of the general population ( 35% of the carers were stressed vs 17% in the general population). Participants (79%) enjoyed spending time and going out with their sons and daughters with disabilities. Greatest challenges for participants (86%) were lack of respite, dealing with difficult behaviours, including physical aggression, and meeting sons or daughters’ social needs. 69% of the participants received support from their family, while 31% did not have any family support. Only 14% of participants received help from friends or neighbours. 79% of the participants did not receive a ‘care plan’ or reviews for their son or daughter with disabilities, although care arrangements had changed over the years in 69% of the cases. In 66% of the cases social services had not discussed necessary changes with the carers and 36% of cases did not receive help from social services.

Most of the participants (76%) stated that their own health was good or fair, despite suffering from various health problems. Two-thirds of the participants relied on informal family arrangements in case the main carer fell ill; in 48% of cases there were no adequate substitute care arrangements. Most of the participants (72%) had not been supported in making long-term plans for the future care of their sons or daughters with disabilities.

“It can be scary at times because you do think… you think, what is going to happen… you know when we do go, hopefully, I’m not wishing for ‘Joe’ … but I hope that God would take him before me…” [mother aged 60]

One of the key messages from this report is that adequate services are necessary earlier in the lives of families with disabilities, focussing especially on independent living skills. Other key messages are that appropriate services, such as sheltered accommodation, must be available so that parents can trust that their offspring with disabilities are adequately catered for throughout adulthood. These service choices must be available during early adulthood, not merely after parents become incapacitated.

Of course, parents and adults with disabilities should receive guidance and help with future planning but this would be easier to accomplish if there was a wide variety of appropriate options that are perceived as safe, desirable, and offering highest quality of support and care. So while unpaid carers are the backbone of community care there is little care for them in the community.

Advice to other parents

“Do not always depend on social services… they often let you down. Look at all the options available and request that social worker provides more than one option.” [mother aged 62]

“… give some consideration to this issue earlier. Look at what options are available and discuss the future with your son/daughter as they grow up, just like you do with other children.” [mother aged 61].

“Try and make them as independent as possible… to learn their child to be independent.” [mother aged 62]

“Take control. Yes, accept the fact the buck stops with you no matter how well meaning the social services. It’s still your child… no matter how good. It’s all about care; who’s going to replace the carer and the best bet is family and friends… You have to identify those people and set it up and trust your judgement rather than a residential home… You have to make your own network, and the natural one is the family and friends, the system you have, to take responsibility.” [mother aged 60].

Recommendations to policy makers and professionals

• Evidence-based early interventions need to be in place to enhance life skills and choices of individuals with disabilities.
• An advocate should be available to each family throughout the life span, to help set up and coordinate appropriate networks of support well in advance.
• Suitable alternative accommodation needs to be available for adults with all levels of additional individual needs.
• Support services for adults with disabilities who live at home and their carers should be easily accessible, especially in rural areas.
• Education and training for service providers needs to focus on evidence-based best practice to meet the needs of these families.

References

Buckner, L. & Yeandle, S. (2007). Valuing carers – calculating the value of unpaid care. London: Carers UK.

Department of Health, Social Services and Public Safety ( DHSSPS; 2001) . Informal Carers Report. Belfast: DHSSPS.

Department of Health, Social Services and Public Safety (DHSSPS; 2006). Caring for Carers: Recognising, Valuing and Supporting the Caring Role. Belfast: DHSSPS.

Dillenburger, K., & McKerr, L. (2009). What the future holds: Older people caring for adult sons and daughters with disabilities. (Final report, pp 151). Changing Aging Partnership (CAP). Institute of Governance, Queen’s University of Belfast.

MENCAP (2002) The housing time bomb: The housing crisis facing people with a learning disability and their older parents, London, Mencap.