Types and stages of dementia

Recent Alzheimer’s Society research shows that 850,000 people in the UK have been diagnosed with a form of dementia. By 2025, this will hit a figure of 1 million. These are of course those with a diagnosis and doesn’t include the other adults who, for various reasons, are undiagnosed. A lot of these individuals will be cared for by partners, relatives and or friends. Increasing life expectancy with what is regularly a condition appearing in later age dictates the need for social workers to be able to work positively, productively, and collaboratively with adults who have dementia to assist in achieving the best autonomy and life quality possible.

Start with the person

As noted in the previous unit, understanding what the person with dementia is going through and how they are feeling about it all is the first and most important part of your work. You need to be realistic with them about what is happening, what’s ahead, what it means, in the here and now. Films such as “Still Alice” provide a helpful starting point alongside the stories and commentaries of people living with Dementia such as The Me In Dementia. Dealing With Diagnosis: http://www.nhs.uk/conditions/dementia-guide/pages/alzheimers-diagnosis-real-story.aspx

Acknowledging the impact of their dementia is key. It will be different for everybody, whatever the severity. To do so you need to be able to explain to them (and, if appropriate, their carer/family/network) what progression of the disease would look like and mean in terms of care.

In doing so a key part is creating reassurance and certainty for the person as far as possible.

You should think about pacing information-giving by being guided by cues from the person and their carer over how much they want to know. Reassurance will also be achieved if you can make suggestions about what the person can do to achieve the best quality of life. It goes without saying that you need to be mindful of how you communicate avoiding medical, and professional terminology, especially towards the end of someone’s life.

Types of dementia

Social workers contributing to this resource told us they can not be experts in understanding types and stages of dementia with adults, nor should they be expected to be. However, you should have a reasonable knowledge of the most commonly diagnose forms:

  • Alzheimer’s (the most common type).
  • Vascular dementia (may occur after a stroke).
  • Lewy Body (nerve cell deterioration, accumulation of lewy bodies in the brain).
  • Fronto-temporal, (lobe degeneration – can affect personality and behaviour).
  • Korsakoff’s Syndrome (commonly caused by long term alcohol misuse).HIV-related (sometimes as a result of late diagnosis & non treatment).
  • Parkinson’s Disease.

Good starting points for specific information about each of these can be found at:

You need to understand the different types, but also the different impacts they have and the way they progressively impact on the person. The Alzheimer’s Society. Dementia Brain Tour http://www.alzheimers.org.uk/braintour provides a helpful set of video clips to help you.

There are different issues, manifestations, symptoms and expectations regarding different types of dementia. Its important to understand that some adults have more than one type of dementia, known as ‘mixed dementia’: https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/mixed-dementia

Some people will also have to deal with “dual-diagnosis”, ie when they have dementia in addition to another known medical condition which may introduce difficulties for them in staying well. Having a sophisticated grasp of how dual diagnosis might make life harder is important, for example, an adult in later life with dementia and autism will have specific needs that will need to be assessed and understood before any planning on how to meet these needs (see A Manual For Good Social Work Practice Supporting Adults Who Have Autism.)

Be aware that many people who are diagnosed with dementia will be living with at least one other long-term condition either at the point of diagnosis or in the future. Dementia rarely manifests in isolation.

You should be aware of conditions that can sometimes be mistaken for signs of dementia, for example urinary tract infections sometimes referred to as UTI’s (common in older adults), depression or brain injuries. You should ensure health conditions such as these have been ruled out before assuming the person has dementia and also be aware that as a consequence of a singular episode of poor health, people can be frequently labelled as having dementia without any evidence, tests or formal diagnosis.

Stages of dementia

There is well documented evidence that dementia has a recognised pathway of progression and the needs of a person with dementia, and their family and carers will be different at different stages of the condition. One might consider the stages to be:

  • Keeping well, prevention, and finding out it’s dementia.
  • Living well.
  • Living well with increasing help and support.
  • End of life and dying well. [4]

We have covered early stages of dementia and working with this in the third unit, ‘Early Intervention’. In the chronology of a person’s dementia, the phrases ‘early stage’ or ‘mild dementia’ are usually used for adults in what is the traditionally recognised ‘working age’ period of their life (up to around 65 years of age), in keeping with historical retirement rules.

It’s important you are able to differentiate between the stages and levels of dementia with the person, and apply your different levels of knowledge in your practice accordingly. Be clear on terminology – there are differing views and uses, and ‘early onset’ can mean a number of things with regard to dementia and its severity.

In particular, you need to have a good grounding in being able to spot the early signs of dementia. The SCIE dementia Gateway provides a good set of resources on this:  http://www.scie.org.uk/publications/dementia/understanding-dementia/diagnosis/index.asp
You may be the first person to have contact with the person and it is therefore important that you are able to provide the reassurance and information for someone early on.

Bear in mind that some individuals will be keen to gain a diagnosis, but not all will. Similarly, as a person’s dementia is progressing, regular reviews of need will be required. A useful source for understanding the later stage of dementia is the Alzheimers Society web page: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses/later-stages?documentID=101

Latterly, you need to feel confident about when to bring in a dementia specialist into the picture. The word ‘referral’ or ‘refer’ can frighten, confuse and exclude those with dementia and their carers. Be confident to explain when you have a role to assist and when you feel someone with different or more specialist skills might be a more suitable co-ordinator, for example, a dementia navigator, Admiral Nurse, third sector support worker or a GP. You need to know what resources are available in your area with this regard.

Early onset dementia

Currently most people diagnosed with dementia are over the age of 65. However there are a growing number who are diagnosed at an early age. There may be an additional set of issues that can arise for that group such as coping with employment, childcare. The following resources can provide you with some insight into these.

Multiple social work approaches:

There are a number of approaches to supporting people with dementia. You are encouraged to access training programs (including e-learning, see resource below) available for health professionals and colleagues in other fields related to working with dementia to expand your own awareness and ensure your knowledge of dementia is sufficient. Our understanding of dementia is increasing and it is important that you are able to maintain the currency of your knowledge.

The social work task

Your role as a social worker needs to change and adapt to the changing needs of the person, family and/or carers. You will need a variety of strategies for social work with dementia. By researching methods of social work which may help, in conjunction with your conversations with the person and their network, you should be able to discuss and support behaviours that change over time. While doing so, you should retain the positive, strengths-based approach around living well with dementia, and helping the person to maximise their quality of life. You need to focus on getting the person and their carer to remember that they can live well with this condition.

Using a timeline

One helpful model suggested by some specialist social workers is using the concept of timelines. Social workers have commented that picturing a time continuum with the person can be helpful. You should attempt to link this approach with how someone’s life in the future links into their lifestyle, hobbies, interests and preferences. You should be able to walk the person through the understanding of typical progression (if they want to know) over time and link it to their current/projected health, what might be typical, in association with concepts of loss further ahead. Being mindful and sensitive over timing and readiness of these sort of conversations is important – you need to judge carefully how ready the person and their carer is around these topics of conversation.

Preparing for the end of life

With failing health a key role is in enabling a person to consider important and sensitive questions about how they’d like to be cared for, and ultimately what plans they want to make for their will etc. The starting point is around capacity and you therefore need to have a good knowledge of the Mental Capacity Act 2005 (Link to be inserted to mca resource).

You need to be familiar with:

  • Lasting Powers of Attorney. This is a legal tool that allows an individual to appoint to make certain decisions on their behalf. There are two different types of LPA: property and affairs LPA and health and welfare LPA. Each type covers different decisions and there are separate application forms for each.
  • Advanced Decisions/Living Wills: An advance decision (sometimes known as an advance decision to refuse treatment, an ADRT, or a living will) is a decision you can make now to refuse a specific type of treatment at some time in the future. It lets family, carers and health professionals know whether the person wants to refuse specific treatments in the future. This is so that they will know the individuals wishes if they are unable to make or communicate those decisions yourself. NHS Improving Quality have useful information that can be found at:
    http://www.nhs.uk/Planners/end-of-life-care/Pages/advance-decision-to-refuse-treatment.aspx
  • Do not resuscitate agreements – tend to be part of advanced decisions.
    You should be able to assist the person to get any processes underway whilst they have capacity to make their care decisions. You will need to be up-to-date on the current thinking on fluctuating capacity, and case law rulings in this area (see TCSW Curriculum Guide For MCA for this).

Learning plan:

  • Which of these practice areas do you feel confident in?
  • Which areas do you need to improve through your own CPD and how will you do this?

Exercise/learning activity:

  • What language might you use when asking a person how dementia has changed their life?
  • Will it differ with someone whose dementia is new, compared with dementia which is advanced and how?
  • How can you ensure diagnoses are valid? With whom will you check?
    In a group, list what might be early signs of dementia for adults different age groups with different health conditions alongside dementia. How do they vary? How might this change your practice? Should it?
  • Which social work theories will you consider when working with an adult with dementia and why? Lifespan development? Loss?

 

References

4. NES framework for dementia.

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