Evan Yacoub looks at the improvements that will have to be made in the care of patients who have an intellectual disability and dementia or other age-related diseases.
Watchman (2014) summarises some of the dilemmas encountered when making decisions about the care of people with learning disability and dementia. In this article I will discuss older people with a learning disability with and without dementia. Referrals to generic services such as nursing homes can also take place when the individual’s physical health needs exceed the capacity of the current care giver(s), regardless of the diagnosis.
This, coupled with the increasing life expectancy of the general population (including citizens with a learning disability), suggests that the debate in relation to supporting this subset of population is one which will be ongoing.
In this article I am keen to discuss the idea that the three options of care for older people with a learning disability outlined below can be more closely linked, rather than being separate entities. Furthermore, these options can be considered with reference to reducing the risk of social isolation and disruption to contact with relatives and loved ones. One potential proposal is the idea of ‘inreach’ into nursing homes to ensure a good quality of care and subsequently a good quality of life for service users. The inreach role can play a significant advocacy role in relation to clinical aspects, in addition to identifying communication issues and any barriers there are to meaningful social interaction. A vignette will hopefully help illustrate this further- Community learning disabilities teams can provide a central link role between the 3 options.
The discussions around where best to care for older people with a learning disability have understandably focused on the area of dementia. The international debate around general or specialised care for people with a learning disability and dementia began in the 1990s with the work of Janicki and Dalton (1999), which coincided with the increase in awareness and knowledge of the link Down Syndrome and early dementia. Janicki and Dalton considered three options: ageing in place, in-place progression, and referral out.
Ageing in place
Many people with a learning disability have existing support networks. Janicki and Dalton (1999) referred to a person with a learning disability and dementia remaining in their own home environment, with adaptations, after a diagnosis of dementia as ‘ageing in place’. This includes:
1. Introducing staff training on dementia, such as the importance of orientation work.
2. Environmental adaptations to address the effects of dementia such improving accessibility.
This can take place in a residential or family home. Watchman highlights the significant issue of lack of support for family carers (Gilbert et al 2004, Watchman 2004) which leads to isolation and a feeling that more expert care is required. Watchman also identifies research to outline the positive aspects of ageing in place. Given that people with a learning disability often find change very difficult and are exposed to significant change in their lifetime, clearly an option which prevents a change of living environment is an attractive one. This is also an option which ensures minimal disruption to family contact.
The 2nd option in Janicki and Dalton’s model for people with a learning disability and dementia is ‘in-place progression’ (Janicki and Dalton 1999). This refers to a move to, or creation of, a dementia-specific environment for people with a learning disability. Watchman states that it is the option least often seen. Absence may be due to care providers not being equipped or financed to adapt premises in order to accommodate people with a learning disability and dementia.
The third option ‘referral out’ involves a move for the person with a learning disability to a generic social care environment usually a nursing home. Watchman outlines research questioning the suitability of such a model (Michael and Richardson 2009). An important factor is the pre-existing difference in communication between those with, and those without, a learning disability. In an environment where staff-to-service user ratios can be low, not having the ability to make one’s needs heard can be a huge issue. Other considerations, such as the lack of a peer group and social activities not being pitched at a suitable level, can also impact on the quality of the placement. Furthermore, nursing homes maybe geographically located in places where it is difficult for relatives to visit the service users.
Thompson and Wright (2001) noted the frequent inappropriate placement and referral out of people with learning disabilities to generic older people’s services. This can sometimes happen as an emergency, but as Hussein and Manthorpe (2005) state, it can also happen, for example, because of hospital closures.
In my current role, I provide learning disability psychiatry input into two counties in Ireland and there are more than 20 service users with a learning disability placed in nursing homes. In some cases this was the service user’s choice, or the preference of the family, but in the majority of cases it was the result of the physical health needs overwhelming local services. A typical example would be where more than two staff are required to turn the service user to prevent bedsores, which would lead to the community placement breaking down.
Ageing in place and in-place progressions are aspirations for local services. Dementia training is a priority and there is a proposal to set up a joint local facility with the team for mental healthcare of older people. The community learning disability service can provide a central link in coordinating such placements, providing an array of care options. However given the number of existing nursing home placements and the possibility of more referrals taking place, it has been important to start to set up an inreach service with four major functions:
1. A psychiatric assessment and treatment service for service users with or without dementia in nursing homes.
2. A health advocacy role to ensure that service users’ physical health needs are adequately addressed, an often neglected area (Michael and Richardson 2008).
3. A social advocacy role to ensure that social communication issues, for example, do not negatively impact on the service users’ ability to integrate into the nursing home environment.
4. A training and education role, which can be informal through meetings with staff or formal by inviting nursing home staff to learning disability-specific training.
The aim is to use HIQA (2013) standards as a template for the inreach service. HIQA is a regulator of community learning disability services in Ireland. By addressing these areas, covered amongst numerous others by the HIQA standards, it is envisaged that some of the challenges encountered in generic environments by people with a learning disability can be overcome.
A service user’s physical health needs exceeded the capacity of local services due to the number of people required to turn her to prevent bed sores and to ensure that she was able to leave her bedroom. An exploration was carried out by the local community learning disabilities’ team jointly with the family, looking to identify the most accessible nursing home for the family members to visit. Multidisciplinary staff continued to be involved in an inreach capacity to ensure that nursing home staff were familiar with the specific needs of the service user, and that every effort was made to facilitate positive contact with family members. Given that some of the family members visiting were children, it was felt that contact outside of the nursing home would be preferable on occasion. A timetable was drawn up to ensure that the service user was dressed and sitting in communal areas for significant periods every day. This reduced isolation, and made it easier for relatives to go out with the service user, therefore maintaining a good quality of life. It was highlighted to nursing home staff that the service user’s communication difficulties could easily lead to her needs to spend time with others not being seen as a priority.
Keeping service users in environments familiar to them when their needs change, or upgrading their environments to meet their emerging needs, should be the gold standard for older people with a learning disability. However, if referrals to generic environments take place, it is important to support such placements and the service users to ensure good quality care and quality of life. A vital aspect of a good quality of life is maintaining positive contact with families, relatives and loved ones. Community learning disability teams can play a coordination role regardless of which option is chosen.