Dennis Lines has twice been a carer: first for his son who was diagnosed with borderline personality disorder, and then for his mother who had Alzheimer’s. He believes there is little support for the carers of people with personality disorders, and is actively involved in trying to improve the resources and backing that these carers can expect.
Dennis Lines’ son was diagnosed with a borderline personality disorder in the early 1990s. Dennis provided total support for his son, by both helping him to get by on a day-to-day level, and also in his contact with mental health professionals.
Dennis and his son both found that the support they received from mental health services could be “exasperating”. They did not see much continuity, and they were often referred to different mental health professionals who had very differing attitudes to personality disorders, and vastly different ideas about the best ways to treat them. This proved especially frustrating, as they often felt they “had to start from square one again.”
Dennis’ problems in finding the right help for his son were made worse by the fact he also found it impossible to find support as the carer of someone with a personality disorder.
“I found that for personality disorders, the ‘carer factor’ was generally unrecognised and unappreciated,” says Dennis. “Carers were even being regarded by some mental health professionals as part of the problem, rather than part of the solution.
“Generally in the UK, a culture exists where PD [personality disorder] carers are routinely deprived of access to helpful information, mental health professional advice, or support of any kind. Carers are often perceived as an unwanted responsibility.”
Dennis’ son died eight years ago, but Dennis has remained actively involved in many national initiatives trying to improve the support available for carers of people with personality disorders.
He was the carer lead for the Department of Health’s National Personality Disorder Programme for many years, the sole carer on the NICE BPD Guideline Development Group and a special advisor to the NICE ASPD Guideline Development Group. He has subsequently spoken at many conferences to help promote the implementation of the NICE Clinical Guidelines for the treatment and management of both BPD and ASPD.
Although Dennis feels that many improvements have been made in treatment of people with personality disorders, he does not think there has been a corresponding improvement in the information or support available to those who care for personality disordered people.
“I have channelled my energies into making sure no other carers will face the same information and support vacuum that I had to address,” says Dennis.
Dennis, who has served as a director of the support organisations Borderline UK and Personality Plus, now runs UK online support groups specifically for personality disorder carers like himself.
“Personality disorder carers come in all shapes and sizes,” he says. “We support the carers – parents, partners, brothers, sisters, children and friends of personality disordered people. Caring for someone diagnosed with a personality disorder is certainly not a positive career move. It is a role that is borne out of sheer necessity.”
“The fact is that currently the only real and consistent support for carers comes from other carers who are going through the same thing. But the truth is they shouldn’t be getting this information and support solely from people like me – they should be routinely getting it from the mental health services.”
Through this on-going work with other carers, Dennis is aware of the difficulties they continue to experience. He explains that although all carers are entitled to a carer’s assessment, this is rarely offered to PD carers and that the vast majority are never even informed that they have this entitlement. He believes this means most carers often miss out on any constructive support and advice.
“There should be people they can refer to, rather than finding themselves totally isolated and alienated from mental health services, which is what’s happening at the moment,” he says.
Dennis feels that crisis support is especially important for those who care for people with personality disorders.
“Families and carers are desperately trying to address major crises involving instances of self harm by personality disordered people, where someone is overdosing or cutting themselves and there is no support whatsoever,” he says. “In the past year alone, I have had to console the carers of three personality disordered people who committed suicide.”
Recently Dennis has also been helping to care for his mother who has Alzheimer’s. He has found the amount of help and support available to him in looking after his mother is vastly different to what was available for carers of people with personality disorders.
“It’s like chalk and cheese,” says Dennis. “I get lots of practical advice from the MH professionals involved in her case, lots of help and advice from the Alzheimer’s Society, lots of understanding from local hospitals, health visitors, and social workers – in fact everything that I did not get from mental health services when caring for someone with a personality disorder”
Dennis would like to see similar levels of recognition and support for people with personality disorders and their carers. He has recently seen some positive developments, such as a localised carer training & support carers group.
“This gives local carers information, advice, knowledge and also some coping mechanisms, practical advice and how they can best manage their situation and also look after themselves,” he says.
But Dennis feels that more is needed, and would like to see this type of support available much more widely.
“Services like these are currently very rare in the world of personality disorders,” he says.
Whatever happens, Dennis feels that carers themselves need to be involved in shaping the support they receive.
“Although there are some exceptions, generally personality disorder carers are either not being engaged with, or they are being engaged in a very tokenistic manner. The way forward has to be a true partnership of collaboration between mental health professionals, carers and the people they care for,” he says.