Friendship and dementia

Friendship and dementia: Hints and tips on supporting friends with dementia | via Alzheimer Scotland

For people living with dementia, maintaining meaningful friendships can be a difficult task. A dementia diagnosis can turn someone’s world upside down and it’s at this time that friendship is valued the most, not only to offer comfort and support but to help to maintain an essence of normality.

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In a 2017 poll  of more than 500 participants,  Alzheimer Scotland’s  ‘Friendship and Dementia’ survey highlighted some disheartening statistics:

  • Two out of three people living with dementia have lost friendships following their diagnosis.
  • 60% of people living with dementia felt reluctant to attend social situations after their diagnosis.
  • 91% of participants felt that there was not enough public knowledge of dementia and what it’s like to live with the illness.

These findings show that more must be done to improve public understanding of attitudes towards dementia, so we are able to help friendships adapt following a diagnosis and throughout the illness. Alzheimer Scotland’s Friendship and Dementia leaflet provides hints and tips on how to provide emotional and practical support to people with dementia, at all stages of the illness. The leaflet provides tips such as:

  • Find out more about dementia and how it’s likely to affect their everyday life. This will help you to support your friend and make you more prepared for changes in the months and years ahead
  • Accept the person your friend is now; try not to draw comparisons with how they were before developing dementia
  • Make sure to talk directly to your friend, especially in social situations.

Full article at Alzheimer Scotland

Click here to access the ‘Friendship and Dementia leaflet’.

 

Managing household duties as a couple

Dr Gayle Madden, Admiral Nurse Professional, talks about how couples living with dementia can work together to manage their household, to ensure the person with dementia maintains their sense of identity | via Dementia UK

When someone has dementia and needs to be cared for it is critical that they retain their sense of purpose and value in the home – for the good of the partnership and the couple’s quality of life. Research has shown that frustration, anger or aggression can be mistaken as a symptom of a person’s dementia, when they are actually expressing their upset with the changes that are occurring within their home life.  kitchen-1745692_1280 (1)

This article provides some tips for professional and family carers to help the person with dementia feel involved in the running of the household, with their other half, so they maintain a sense of purpose and value.

Full article at Dementia UK

Decision-making in people living with dementia

Bhatt, J et al.  | The nature of decision-making in people living with dementia: a systematic review |  Aging & Mental Health | published online 6th December 2018

Abstract
Objective: The objectives of this systematic review were to: 1) understand how people living with dementia are involved in making decisions; 2) explore the different decisional styles and domains of decision-making that people living with dementia experience and 3) identify what influences the level of decisional involvement of people living with dementia.

Methods: A systematic review of literature identified studies from Medline, PsycINFO, HAPI and CINAHL databases. Search terms related to decision-making and dementia. Qualitative and quantitative research designs were included. Appraisal of included studies was done using quality ratings. All studies focused on how decision-making took place. Extracted findings were synthesised narratively with concept mapping, conceptualisation and an exploration of connections between studies to develop an overall model of decision-making involvement

Results: Fifteen studies fully met the eligibility criteria (thirteen qualitative and two quantitative). All studies had moderate to high quality ratings. Participants were predominantly people living with dementia, Parkinson’s disease and stroke. The model of decision-making encompasses four decisional styles (managed autonomy, mutual, reductive and delegated) determined by different degrees of involvement from the person living with dementia and their supporter. The decisional style implemented was influenced by the presence or absence of background (the Freedom of Choice framework) and contextual factors (risk, relationships and resources).

Conclusion: Decision-making in dementia is complex and influenced by many factors beyond cognitive impairment alone. This review indicates that decision-making in dementia takes place through decisional styles, determined by unique levels of involvement from people living with dementia and their carers.

Interventions maintaining eating independence in nursing home residents

Palese, A. et al. | Interventions maintaining eating Independence in nursing home residents: a multicentre qualitative study | BMC Geriatrics | 2018 18:292 | published online 27 November 2018

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Background
Despite 32 years of research and 13 reviews published in the field, no intervention can be considered a gold standard for maintaining eating performance among residents with dementia. The study aim was to highlight the interventions derived from tacit knowledge and offered daily in assisting eating by healthcare professionals (HCPs) in nursing homes (NHs).

Method
A multicentre descriptive qualitative study was performed in 2017. Thirteen NHs admitting residents with moderate/severe functional dependence in eating mainly due to dementia, were approached. A purposeful sample of 54 HCPs involved on a daily basis in assisting residents during mealtime were interviewed in 13 focus groups. Data analysis was conducted via qualitative content analysis.

Results
The promotion and maintenance of eating performance for as long as possible is ensured by a set of interventions targeting three levels: (a) environmental, by ‘Ritualising the mealtime experience by creating a controlled stimulated environment’; (b) social, by ‘Structuring effective mealtime social interactions’; and (c) individual, by ‘Individualising eating care’ for each resident.

Conclusions
In NHs, the eating decline is juxtaposed with complex interventions regulated on a daily basis and targeting the environment, the social interactions, and the residents’ needs. Several interventions that emerged as effective, according to the experience of participants, have never been documented before; while others are in contrast to the evidence documented. This suggests the need for further studies in the field; as no conclusions regarding the best interventions have been established to date.

Full document: Interventions maintaining eating Independence in nursing home residents: a multicentre qualitative study

Sundowning (changes in behaviour at dusk)

With the clocks going back at 2am this Sunday 28th October, Dementia UK shares some tips for preventing and managing sundowning

What is sundowning?

alarm-clock-2175342_1920Sundowning is a term used for the changes in behaviour that occur in the evening, around dusk. Some people who have been diagnosed with dementia experience a growing sense of agitation or anxiety at this time.

Sundowning symptoms might include a compelling sense that they are in the wrong place. The person with dementia might say they need to go home, even if they are home; or that they need to pick the children up, even if that is not the case. Other symptoms might include shouting or arguing, pacing, or becoming confused about who people are or what’s going on.

Tips for managing sundowning as it happens

  • Use distraction techniques: go into a different room, make a drink, have a snack, turn some music on, or go out for a walk
  • Ask the person what is the matter. Listen carefully to the response and if possible, see if you can deal with the source of their distress
  • Talk in a slow, soothing way
  • Hold the person’s hand or sit close to them and stroke their arm.

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Practical tips on preventing sundowning

  • Follow a routine during the day that contains activities the person enjoys
  • Going outside for a walk or visiting some shops is good exercise
  • Limit the person’s intake of caffeinated drinks. Consider stopping the person from drinking alcohol altogether. Caffeine-free tea, coffee and cola are available, as is alcohol-free beer and wine
  • Try and limit the person’s naps during the day to encourage them to sleep well at night instead
  • Close the curtains and turn the lights on before dusk begins, to ease the transition into nighttime
  • If possible, cover mirrors or glass doors. Reflections can be confusing for someone with dementia
  • Once you are in for the evening, speak in short sentences and give simple instructions to the person, to try and limit their confusion
  • Avoid large meals in the evening as this can disrupt sleep patterns
  • Introduce an evening routine with activities the person enjoys, such as: watching a favourite programme, listening to music, stroking a pet etc. However, try to keep television or radio stations set to something calming and relatively quiet—sudden loud noises or people shouting can be distressing for a person with dementia.

Full information leaflet: Sundowning (changes in behaviour at dusk). Understanding changes in behaviour in dementia | Dementia UK

Dementia patients could remain at home longer thanks to ground breaking technology

Innovative new technology could enable people with dementia to receive round the clock observation and live independently in their own homes, a new study reports. | University of Surrey | via ScienceDaily

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Researchers from the University of Surrey in partnership with Surrey and Borders Partnership NHS Foundation Trust have developed state of the art Artificial  technologies, powered by machine learning algorithms, to monitor the wellbeing of people with dementia.

The study known as Technology Integrated Health Management (TIHM) for dementia, uses the ‘Internet of Things,’ a network of internet enabled devices (sensors, monitors and trackers) installed in homes, which can detect an immediate crisis as well as changes in people’s health and daily routines. Any change could indicate a potential health issue and if identified early could prevent a person from becoming seriously unwell and requiring emergency hospital admission.

The well-being of people with dementia can also be monitored using this innovative technology which can detect agitation and irritability.

Full story at ScienceDaily

Journal reference:  Shirin Enshaeifar, S. et al. | Health management and pattern analysis of daily living activities of people with dementia using in-home sensors and machine learning techniques | PLOS ONE |  2018; 13 (5):

 

 

New report from Sheffield Dementia Involvement Group

Sheffield Dementia Involvement Group (SHINDIG)  provides a forum for people with dementia (and their family carers / supporters) in Sheffield to share their views and experiences of living with dementia and of health and social care services. The group has been running for five years, and meets four times a year.

The SHINDIG group have recently produced the following report giving advice for staff about gathering feedback on their experience of services from people living with dementia:

Advice to NHS and Social Care Staff on Gathering Feedback from People with Dementia and their Family Carers / Supporters

 

Community Engagement Toolkit for Care Homes

This How To Guide will give care home managers and staff guidance on how to create a community within care homes. The guide will explain how to bring members of the local community into the home to volunteer, befriend, run activities and form friendship groups | Alzheimer’s Society 

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Image source: http://alzheimerweb.prod.acquia-sites.com

Alzheimer’s Society has been running the Airedale Social Movement Programme in Airedale, Wharfedale, Craven and Leeds since August 2016.  The programme aims to bring local communities into the care home, and put the care home at the heart of the community.

One of the objectives of the programme is to spread the programme so that others can replicate the work that has been undertaken, and the Alzheimer’s Society have launched resources to support this including a How To Guide for Care Home staff.

Letter and poster templates are also available to download here

More detail at Alzheimer’s Society

Full guide: How to engage with the community: A care home guide