Silence is not always golden; the impact of losing your hearing aid…

 

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Recent research evidence in the UK and America has shown that hearing loss has a direct impact on cognitive decline and dementia. In summary people affected by increased levels of hearing loss are more likely to develop dementia. This doesn’t mean that if you have a hearing loss you will get dementia. However, hearing loss is strongly associated with increased odds of developing dementia. Since dementia mostly affects older people, as does sensory losses such as hearing, then it isn’t surprising that many people with dementia also require hearing aids.

There are many reasons why people do not seek early advice about hearing loss; they may be unaware of the loss and over time those nearest to them have adapted to this. All sorts of personal reasons can be given including aid appearance, costs and difficulties using the hearing aids. Rural hearing aid users can find that there are seemingly overwhelming mountains to climb to access hearing aid support. One of the findings from this study has been that although the initial audiology assessment and fitting of aids is excellent; the follow-up and support is tricky.  Families praise the expertise and compassion of audiology professionals. Reconnecting and accessing the service after the fitting isn’t because of the audiology service itself, but because rural dwellers now find it more and more difficult to access the services, especially if they have no means of independent transport.

In many rural areas, CCGs are strapped for cash. Hearing services may be outsourced to private companies and/or remain NHS; this leads to confusion among patients who can find it tricky to obtain support, especially when services have changed hands. Same geographical areas may be served by several providers with contracts determined by the age of the patient (child/adult/older age). Local centres, such as GPs, can no longer hold spares for all hearing aid users and so batteries and cleaning tubes may require a trip further afield to collect. The patient has to learn to navigate between adult and older adult hearing services and their respective sites.

This may seem fine but for people with dementia and their caregivers the challenges this creates are multiple. No longer can a younger person with dementia access local GP centres for ongoing support or supplies such as batteries. This means that supplies can be accessed only at larger centres, frequently up to 20 miles away in each direction. Simple supplies such as batteries can be sent by post to the home address but many patients are not aware of this information. More complicated spares or replacements inevitably involve a visit to the central hub, located in the cities. This is one of the consequences of the closures of smaller general and community hospitals.

It gets incredibly complicated when hearing aids are lost, which is not that uncommon, in dementia. The person with dementia has to then apply for new aids and attend for a refitting. This leads to lengthy waiting periods with no effective means of communication and frustrations all round. Families with enough financial resource, resort to paying for new aids using high street chains or even online. Where finances cannot meet this then there are increased risks of strained relationships, increased risks of falls and general decline in cognitive function. It would make sense to prioritise people with hearing loss and dementia by responding to requests for ongoing follow-up and support, in order to minimise these risks of harm to individuals and carers. Carers may reach points of crisis and resort to shouting and pushing their loved one, from the sheer exhaustion of trying to communicate. A fractured hip, a breakdown in care, is far more costly to the NHS than a local health centre hearing aid refit consultation. In not only financial but also emotional and well- being terms.

These “bottom line” discussions are often raised by the families and care providers who kindly give their time to the study. These are not political rants but genuine expressions of bemusement and anger at the everyday struggles to access basic equipment. We are not discussing high cost experimental treatments which often attract media attention but the proven relatively low cost things which improve the lives of so many. As one professional stated: ” …we’re talking about the budget branded items in the supermarket of the NHS, not the elite supreme range. We need the tools to do our work and a say in how that is organised”.

Families tell me of the practical struggles of caring and how these are amplified by hearing loss. Voices become hoarse with constant shouting; eventually less and less conversation happens and so actions are carried out without the usual loving reassurances; frustrations set in. The person with dementia tries to understand and seeks to make amends or further reassurances.  The carer feels guilt at their compromised kindness and wonder at how they arrived at this point of  despair. A cycle of raised tensions and misunderstanding ensues. Some battles are left to one side as energies become spent on simply managing all those essential caring activities which  are reduced to endless rote commands. Communication becomes robotic with few moments for general chit chat or even a mutual moan as each become lost in silence.

Yet this cycle of disruption can be mitigated by steps to consider the importance of sustained support services, such as audiology. Rural dwellers and those who cannot travel long distances need their face to face services to remain local and accessible. People will not travel to acute hospitals in cities for seemingly none acute care; parking is tricky and public transport can be none existent.  Hospital environments are extremely intimidating frightening places for people with dementia. This becomes an impossible mission(s) and so often is delayed or abandoned. The habit of wearing the aids is lost; learning to use the aids will have to begin again if the aids are replaced. Audiologists know this yet they are often not heard in the decisions making processes to distribute funds across community services.

Glasses are worn by many; we go to the opticians and are often offered deals on multiple pairs. This is accepted as the norm. For those with dementia a “spare pair” are often secreted to “one of those places” (for safekeeping) until they are needed. Denture impressions are often given to caregivers to also keep in “one of those places” so that replacements can be made promptly in the common scenario of loss or breakage. Most of us loose our glasses; sit on our dentures;  mislay our hearing aids. Dementia can increase the odds of this happening although when and how often is less predictable. There may be clusters of multiple losses in a short space of time, possibly as a consequence of a change in the dementia trajectory or illness which increases cognitive loss. Services need to accommodate these rural dementia specific issues within their planning and not penalise services or individuals.  Let’s work towards a solution for ensuring that hearing aid support is considered a priority in dementia care. Sometimes the least visible stuff can make the most difference.

Dementia care is about planning for future events and mitigating them; we know lost and broken items are part of this. Integration of dementia care across services need to consider the rationale for relocation of core services and the accessibility of centralised hubs by rural families affected by dementia. It is necessary for maintaining the health and well being of families affected by dementia and all those professionals who provide support.

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