Situation: Alan Burns, 52, has been diagnosed with early onset dementia. It was thought at first that he may have Huntington’s disease, but this has not been confirmed. For the past nine months since the diagnosis, he has been cared for by his wife, Amanda. He suffers long bouts of forgetfulness and rarely engages in any social interaction. Their three grown-up children live away from home. Only one, Stephen, lives nearby, and he visits regularly with his two young children.
Problem: Amanda had seemingly been coping with caring for Alan, who consistently refused to engage with services. Recently, disoriented, he fell and fractured his arm, hip and knee. Once he was in hospital, Amanda said she could not cope with Alan. He was incontinent, and could not carry out personal care tasks. He had been constantly waking during the night and keeping Amanda awake too. He would not let anyone but Amanda help, and often would get aggressive towards her when she tried to intervene. He refused to let a community support worker into the house. Now that he needs help with walking and getting around, Amanda has spoken up. Stephen has stopped visiting with the grandchildren because he was worried about his father and did not want the children to see him like this. This, too, has caused conflict between Stephen and Amanda. Amanda is now refusing to take Alan home from hospital.
Alan has a label rather than a diagnosis, and this is likely to get in the way of his care and rehabilitation. There are complex issues that need to be addressed by a multi-disciplinary team that includes specialist services for people of working age with dementia.
Health and social care professionals lacking expertise in dementia can be paralysed by their lack of knowledge – resulting in inappropriate or non-existent services. A named consultant, preferably a neuro-psychiatrist or neurologist, should take clinical responsibility for assessing Alan’s underlying condition. The results of the investigations and the implications for the future should be clearly communicated to Alan, his family and the people providing his care.
Alan is frightened and bewildered, and his sense of well-being is very low. He should also be assessed for depression and be given access to an advocate to help him to get his voice heard.
Amanda must be exhausted and is within her rights to refuse to take Alan home. She should be offered a carer’s assessment, to look at her own needs and establish what could help her to carry on caring. The Burnses should be referred to the Citizens Advice Bureau for advice about benefits and enduring power of attorney.
Children of younger people with dementia often fear they have inherited the condition themselves – Stephen may have fears for his children. Genetic counselling should be offered to the family to address these concerns. They could contact the Alzheimer’s Society for support from the specialist service for younger people with dementia.
Physiotherapy and occupational therapy may be able to get Alan back on his feet. Future assessments should focus on the abilities he has retained, to increase his confidence and rehabilitate him as far as possible.
A holistic assessment of the Burnses’ problems and provision of appropriate health and social care services may mean Alan can be rehabilitated home. This option should be explored before looking at permanent care.
This panel response was written with Janyce Quigley, early onset dementia project worker, Milton Keynes.
Is Amanda not going to have Alan back home under any circumstances? If she is not, the plan would almost certainly be 24-hour care in a specialist environment. If there is scope for negotiation, a multi-disciplinary care plan could be considered. Either way, there are questions around Alan’s capacity to make informed decisions and express his wishes.
I would recommend determined efforts by his consultant to establish a clear diagnosis. This process could help a multi-disciplinary team to decide the degree to which Alan might be able to contribute towards important life decisions and the possible use of the Mental Health Act 1983. A diagnosis can help to predict how the disease will develop and inform the treatment and care plans.
With Amanda’s support, it would be possible to implement a care plan at home. This could involve specialist home care support for personal care, assessment and support with toileting needs, specialist provision for occupational activity, support throughout the night including out-of-hours home care and night-sitting, and respite care in a specialist residential or nursing environment. A carer’s assessment for Amanda may highlight her needs for respite, information, emotional and practical support, and for help to make connections with local and national support groups.
Careful and sensitive time with Alan needs to occur, and Amanda’s support could be invaluable because she seems to be the only one he will respond to, albeit erratically. Specialist nurses or carers from the community could be introduced to Alan in hospital to carry out personal care tasks, with Amanda working alongside them. They might then be able to develop meaningful relationships, learning about the couple’s hopes and aspirations, their fears for the future.
In time, the nurses, carers and Amanda might put care strategies in place that suit Alan’s needs, behaviours and personality. Having developed relationships, the specialist nurse and carer team would continue in the community should discharge home occur. This process would lead to a case conference including the multi-disciplinary team, Amanda and Stephen. If the conclusion leads to specialist 24-hour care, application for continuing health care funding would be recommended.
I admire Amanda for making a stand – it can’t be easy refusing to have your husband home, writes Kay Sheldon. Amanda cannot continue to look after Alan at home without any help or support as both her and Alan’s health are being compromised.
Health and social services need to take a more proactive stance with input from professionals who specialise in the needs of people with early onset dementia and their carers. The starting point could be a meeting between the professionals and Alan and his family to find out the problems and what family members’ concerns and opinions are. An advocate for Alan should also be considered.
It would make things easier for Amanda if her son, Stephen, was more involved. Both need to feel supported and to be given information about Alan’s condition and the various care and support choices that are available. It is possible, even likely, that Amanda would like Alan home if specialist help was available.
Perseverance may be needed to establish the optimum support system for the family. Any support workers that are involved should be properly trained and supervised. A psychologist may be able to give advice to the support workers, and also to the family, on how to relate more effectively with Alan. It will be important for the services to keep the lines of communication open with the family so that problems can be discussed as they arise, especially as Alan’s condition progresses. Having a crisis plan may be helpful to avoid a situation getting out of hand and to give the family some peace of mind.
Alan is probably feeling frightened and confused, and it is important that his emotional needs are not overlooked. Reassurance and routine will help to some extent, but consideration should also be given to maximising his sense of self-worth. The skills of an occupational therapist may be beneficial, both in helping to meet Alan’s psychological needs as well as providing advice and support to Amanda.
If Amanda really feels that she cannot have Alan back home or if the home situation subsequently breaks down, it will be important for services to make sure that Amanda does not feel guilty or unfaithful to Alan.
The family should be actively involved in finding the right residential setting for Alan which should then be seen as extension of the family home itself.
Kay Sheldon is a mental health service user.