Julie Vernon’s excellent but harrowing account of her mother’s life with dementia in the face of medical complications, her hospital experiences and how these affected her family, firmly attest to a stark and shocking reality. The multiple and complex issues she describes, although unique to her mother and family, are unfortunately not unusual in the lives of numerous men and women living with dementia and those who care for them.
It is true that many people are living well with dementia. But these are not the people we see in our counselling room. We are still in dire need of basic education and training for health and social care professionals. What exists more often than not is an inadequate and potentially dangerous state of affairs that Ms Vernon and her family experienced first hand.
I have counselled family carers and people with dementia in the US and the UK for over 30 years. Over this time, I have learned a great deal within group and one-to-one counselling relationships with men and women caring for someone with dementia. I have been fortunate to have worked with a large number of older adults across the spectrum of mental health issues, including mild cognitive impairment, diagnosed conditions of dementia, and the multiple aspects of depression, anxiety and the practical horrors that accompany the role of carer. And I have been intrigued to discover that counselling can be helpful, supportive and empowering for carers. I have also been both a counsellor and a family carer myself, firstly as stepdaughter to a lovely man diagnosed with vascular dementia, and, five years following his death, to a stepfather with Lewy body dementia. Supporting my mother through very different experiences with her two husbands, and trying to share knowledge and information with professionals, with little and no success, from an ocean away, was intensely frustrating and terribly sad.
The focus of this article is the therapeutic relationship when a counsellor finds him/herself with a client who is the child, spouse or other family member caring for a person with dementia. You may be counselling such a client already; or you may be interested in including family carers and relatives in your practice; or you may be a counsellor who is also a family carer yourself, as was my own experience over several years. Throughout the article, I have used the term ‘carer’ to mean specifically carers of people with dementia.
Can counselling help?
As predictions for living with dementia rise dramatically, and the numbers of carers rise with it, supporting carers of people with dementia is a vitally important development of our roles as counsellors. Where counselling is available, for the person who would like to engage in this particular kind of relationship, it can make a huge difference. I have witnessed the change in carers, who move from surviving, spiralling ill health, depression, anxiety and feelings of hopelessness and helplessness, to the emerging possibilities of coping and regaining some sense of perspective, renewed self-awareness and self-care, and the return of some measure of agency and control in a world where it seems that little exists. Counselling for carers of people with dementia can give the all important supportive, safe and confidential environment where men and women can vent their feelings, their grievances, and create and try out different coping strategies and advocacy roles.
We know that living with dementia may continue for many years. Many carers feel emotionally and spiritually isolated at best, and actively shunned and ignored at worst. They may feel that their friends, lovers or work colleagues can no longer listen to yet another account of the life they are now leading on a daily or hourly basis. An objective ‘outsider’ and non-judgmental listener can give the needed support and bear witness to the person’s reality, just as it is, without expectations.
Counselling issues to consider
The demographic of who the carer is has changed dramatically over the years. My client carer could be a nine-year-old grandchild in a five-generational household. He/she could be a gay, lesbian or transgender partner or adult child additionally struggling with prejudice, invisibility or hostility from other family members, the health and social care system and society at large. A 90-year-old parent could be caring for their 65 or even 70-year-old ‘child’ with dementia. All carers face the enormity of coming to terms with dramatic change, loss and grief in their relationship with the person with dementia, and with the person they themselves have had to become in order to fulfil their new role. On top of this, there may be immense practical, legal and advocacy issues.
The client who comes to counselling may well be experiencing extreme fatigue, depression, anxiety, anger and rage. Isolation, loneliness and alienation from self, spiritual community and practice, other family members, partners and friends, contribute to this. Wellbeing and health may be hugely compromised; time to oneself or indeed time to take care of one’s own life and home, tend to be shoved to the bottom of the pile or fall out of focus completely. One carer described to me how attached and dependent her husband was upon her, to the point that she could rarely go the toilet without precipitating a catastrophic reaction.
For those caring for a partner with dementia, their dreams for the future and/or retirement plans together are threatened or ended. For those caring for a parent, they are often stuck, pulled and torn between the needs of the parent and the needs of their own young children (in the case of young onset dementia) or teenagers or grandchildren. Increasingly, the person providing care is still working him/herself. This creates additional difficulties within their career and the ability to be emotionally and physically well enough to work and achieve all that is expected.
The carer is also the main source of knowledge, skill and information for those professionals with whom (s)he is now expected to entrust their parent, sibling or partner, as Julie Vernon experienced. The carer may be dealing with a lack of quality care from the GP surgery, the roller coaster of hospital admission and discharge, not to mention the trauma of a hospital stay.
Under the increasing and ongoing stress and strain of living with dementia as a carer, previous mental health concerns may become current. Alcohol and drug dependence (including prescription and over-the-counter drugs), eating disorders, obsessive and/or compulsive coping behaviour may increase to unhelpful or dangerous levels and emerge as part of the carer’s narrative. I have also experienced clients needing to work through issues of historical difficulty and estrangement or various types of abuse, as these collide in traumatic ways with their new and usually unsought role as carer.
Sometimes the distress is such that the carer may speak about possible or actual self-harm, suicidal thoughts and/or attempts, or the desire, (about the person they are caring for), to ‘put her out of her misery’. These concerns will need to be explored with courage, skill and sensitivity by the counsellor, who will also seek professional guidance and supervision as necessary. It is essential that the counsellor discusses with their carer client, in the initial session, the confidentiality of their relationship, and the circumstances under which it may be challenged, so that the carer clearly knows and agrees with the way of working.
Occasionally, the person providing care for a partner is drawn into or seeks a relationship for friendship and companionship, and/or sex. Adult children may find these developments particularly distressing, as do other family members, friends, and some professional care staff. Who can the carer speak to about this, especially if the relationship becomes life enhancing and enjoyable and helps them to continue in their role as carer for longer, in more healthy ways? Counselling can provide an opportunity for the client to simply share this or to work out what to do about it, with a non-judgmental professional who will not tell him/her what to do and will offer acceptance and empathy.
In some cases the client is supported to decide that he or she will not be the carer. There is an automatic assumption in our society that if you move and breathe, you will become the person who cares for your partner or relative. It is very difficult to say no, especially if you are the only living relative, the closest geographically, female, or, heaven help, if you are, or have been, associated in any way with the health or social care field. You’re it!
With the best of intentions of providing care, an uninformed or overwrought carer may tell you that they have shouted at the person they care for, or pushed or handled their relative in a rough way. I recall hearing about a carer whose usual routine was to tie their mother into her bed in order to prevent her from falling down the stairs during the night. The carer knew that (s)he would not hear her if she got up during the night and genuinely thought that (s)he was keeping her safe and was acting in her ‘best interest’. My experience has been that individuals have not known or understood their desperate need for help and support, and after the initial shock, they express relief and gratitude that help, solutions and interventions, or respite or a permanent move, are on the way, offering much-needed safety for both parties. It is essential that the counsellor knows his/her role with regard to neglect and abuse of adults at risk, and safeguarding adults at risk policy and protocol. As mentioned earlier, discussing confidentiality and in which instances a counsellor will be required by law to share something outside of the session in the initial assessment or first session, is vital.
The question of care
The mammoth tasks and emotional demands involved in searching for and deciding on various services including day care, home care, respite and residential or nursing care, may become the focus of the counselling hour. Julie Vernon poignantly describes her family’s decision that her father couldn’t cope and her mother needed specialist care as ‘heartbreaking’, a sentiment that I am sure many carers would echo. Such decisions can raise all manner of issues within the family and may create discord and division and the exposure of old wounds and animosities, which threaten, and sometimes succeed, in pulling families apart. The legal requirements and necessity for a responsible party to act on behalf of the person with dementia in regard to health and end-of-life care, finances, houses and assets, where to live, inheritance and taxes, may be the particular circumstances that have brought your client into counselling.
In some cases, the apparent ‘solution’ of making a move to a residential facility falls hugely short of what one was hoping for and had been led to believe. There may be several moves to other homes, misadventures with medication, doctors, managers and staff, during which, further deterioration in carers’ own physical and emotional wellbeing is exacerbated. It may come as a surprise, given the continued negative press around care homes, but my experience is that at its best, a care home with trained and compassionate staff can contribute to a quality of life, care and compassion and indeed the possibility of living well with dementia, which expressly includes partners, family and friends as part of that experience.
Basic information and training about how dementia affects a person would have been sufficient for hospital staff to appreciate and understand what Julie Vernon’s mother was experiencing. However, as Julie reports, we know that there is inadequate awareness training in most acute hospital settings. There are myriad reasons for this. Certainly when staff shortages occur, the one-on-one support often needed by patients with dementia usually falls to a relative, or sometimes to a fellow patient, who looks out for their ward mate, ringing the call bell on their behalf and alerting staff and family members to the ongoing difficulties. Overwhelmed staff are often not aware of how much more distress they create by expecting relatives to fill in the gaps resulting from inadequate training, insufficient staffing, resources and lack of sensitivity.
We can see from the article that there are innovations and attempts to address the needs of the person with dementia, such as the RoamAlert bracelet, although technology is not a replacement for the obvious and desperate need for human reassurance. My experience over many years is that skilled, compassionate and empathic staff and care do exist, and that it can make an enormous difference to how care is delivered and experienced by the person with dementia and their relatives. When it is not available, drastic scenarios shatter the illusion that one might indeed live well with dementia, either in hospital, a care home or the local community.
The counsellor of a carer may find it a challenge to resist becoming a social worker and problem solver, rather than supporting the client to take steps themselves to find those who can help and take on some of the practical issues. A counsellor may also be a carer of a person with dementia. This will increase the layers of empathy, but will also heighten the necessity for sharp self-awareness, reflection and honest supervision. The counselling session may take place in locations other than the familiarity of your counselling room and counselling centre. You may find that you will be making an appointment with the carer in their home if the client has mobility or transportation concerns or if they cannot easily leave the person with dementia at home or in the care of another on a regular basis. This will require additional reflection, preparation and supervision.
As a counsellor, I have found the experiences of working with carers to be hugely rewarding, diverse and interesting. It is often difficult and emotionally charged territory, requiring our full attention so that we do not over-identify with the client or self-disclose in ways that would be unhelpful or even unethical. It is also not for the ingénue or the person who may be inflexible in approach, or who will be inclined to want to sort out all of the issues on the client’s behalf. There is a fine line between supporting and empowering the client to make their own decisions and the ethical dilemma of withholding information that we know could be helpful under the guise of ‘not giving advice’. Regular professional supervision, and education and training will continue to be an essential requirement for any therapeutic work we engage in with clients who are carers of those who have dementia, as will healthy and enjoyable relationships and activities.
With my grateful thanks to Julie Vernon, who has shared deeply from her heart and her own experiences, allowing us to explore these important concerns and encourage the continued growth and development of counselling and psychotherapy for those living with dementia.
Danuta Lipinska is a counsellor, supervisor, and specialist in ageing and dementia care, a training consultant, author and international speaker. She has pioneered specialist counselling services for people with dementia and their relatives and continues to be highly involved in this area of expertise.